The following is a copy of the message I sent out to all the members of our “Monsters Against Myeloma” facebook fanpage:
Where to begin, where to begin… If you grew up in the 90’s, like me, you might know what I look like. Yes, that’s right, Krillin from DragonBall Z, minus the robes and muscles. Add in Will Smith ears and, now, a never-ending forehead (or in the words of Rihanna, “5head”), then VOILA!
Two days ago, my family decided that it was time to shave my mom’s hair. To say that that was traumatic would be a small understatement. So yesterday, my brother and I shaved OUR heads to make mama bear feel better. Needless to say, hair is NOT just hair. Hair loss is a common side-effect of chemotherapy seen in cancer patients. Although many will often say that “Hair is just hair, it’ll grow back”, the issue can often run much deeper. Hair is not just hair, it’s something that is a part of our being, like our laughs and our smiles. The hair loss associated with chemotherapy is a strong symbol of a cancer patient’s plight. Before all this stuff happened to us, as someone viewing from the outside-in, I used to associate the hair-loss as a sign of frailty, sickness, and vulnerability. However, my perspective on the issue couldn’t be any more different now. Now, whenever I see a patient suffering from chemotherapy-induced hair loss, I see it as a true sign of strength. This might sound a bit awkward, but I really do think that this image, this “symbol”, is actually quite beautiful. To see someone fighting so hard and willing to do whatever it takes, it is a sign of bravery, strength, and perseverance. One that deserves a standing ovation. I don’t usually send out messages that are so personal, but I thought that this was important.
My hopes are that, through this message, your views of the “typical” cancer patient will be changed (if you see them like I once did). That baldness, that fatigue, that struggle. It is something to be admired. These people are *literally* fighting to live, fighting for things that we take for granted every day. They are fighting for a walk in the park, a swim in the lake, a moment to laugh. They are putting every single ounce of their BEING into fighting off a terrifying beast, so much so that they have no energy left to eat, walk, or even talk. This courage and strength is something to be admired. So, without sounding too preach-ey, the next time you see a cancer patient, please keep this message in mind.
In conclusion, I leave you with this:
There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head. ‘Well,’ she said, ‘I think I’ll braid my hair today.’ So she did, and she had a wonderful day.
The next day she woke up, looked in the mirror and saw that she only had two hairs on her head. ‘Hmmm,’ she said, ‘I think I’ll part my hair down the middle today.’ So she did and she had a grand day.
The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. ‘Well,’ she said, ‘today I’m going to wear my hair in a ponytail.’ So she did and she had a fun, fun day.
The next day she woke up, looked in the mirror and noticed that there wasn’t a single hair on her head. ‘YEAH!’ she exclaimed, ‘I don’t have to fix my hair today!’
Health, Hope & Happiness my friends
Stem cells are being re-introduced!
I will never be able to eat corn again…
Why, you ask?
WELL. Before the stem cells were infused back into the motherland, they were stored in a type of preservative. Now, as they are put back into my mom, her body starts to take up the stem cells and rid itself of anything else that is foreign a.k.a the preservative. This is done purely through the natural process of perspiration (not sweating, but just…diffusing out). As my mom exhales and her body perspires, the preservative, which has a HEAVY “creamed corn” scent, is excreted. At first, it wasn’t that bad. But now, holy guac.
It. Is. THICK! I may need to go for a walk/breather so I don’t pass out. Needless to say, corn will never taste the same again (if I can work myself to eating it again).
Months of stress and anxiety. Weeks of work up (tests, medication, etc.). A day and a half for harvesting. All leading up to this critical point, the ACTUAL transplant itself. This grand and momentous occasion.
It took 15 minutes.
I must admit, for all the work that you put into this procedure, the transplant, itself, is QUITE anti-climatic. It is such an important procedure, a procedure that can make the difference between life and death really, that you expect something very.. I dunno, BIG! But just as fast as they nurses were in, they were out. I barely had a chance to take a picture because the stem cells were being infused back so fast. You almost expect something a little more intense. But, like I said before, perhaps great things come in small, humble packages. And that’s exactly what this transplant was.
I was really hoping to take my mom out on pass (you don’t start to feel the side-effects for about 3-4 days afterwards), but we are apparently a part of this new study (mama bear is only the second person to have gone through this at our hospital) where patients are given Velcade (chemo) before and after the transplant. Hopefully it will mean a long and lasting remission. Has anyone heard of this before? So that means we can’t take her today after she’s completed her hydration because she’s getting her Velcade tomorrow. But afterwards, we should be good to go. I think she needs to get out of the hospital. Aside from the absolute STUFFINESS of this place, you feel like you’re bunking in (as our dear friend, Carol, said) an A&W a.k.a Brown, yellow or Brown, orange color schemes. Let me tell you, whoever the hospital hired as their interior designer for this ward…Fail. Unless you have some weird fantasy to live in an A&W or something…
Sent from my BlackBerry device on the Rogers Wireless Network
My mom looks like a big, bald squirrel. Because of all the ice she is chewing (see picture), she looks like she’s hoarding a bunch of nuts in her cheeks haha. But she’s determined! Her cheeks are cool to the touch when you feel them so that’s good, now all we have to do is maintain consistency and be diligent! Other than that, today is a beautiful day. We have a million dollar view!
Sent from my BlackBerry device on the Rogers Wireless Network
Shaved the head yesterday….To say it was a little traumatizing would be a bit of an understatement.It takes a little bit of adjusting, but I think these things just take a little bit of time to get used to.Yesterday we packed all our clothes (like we were going on vacation or something!) and today we checked into our inpatient unit. It’s been a long, busy, and heavy day. Right now, mama is hooked up to the IV machine for hydration therapy and will be until about 6pm tomorrow (it is now 830pm). The reason for this is because TOMORROW, she will be receiving the MEGA dose of chemo (Melphalan) to clear out her body. Apparently it is a tiny “push”, but is potent enough to affect your taste buds for 6 months and give you mucositis. The half-life of melphalan is about 4 hours (?), so you want to get this out of your system A.S.A.P. (hence the hydration). So basically, mama bear will be forced to pee a LOT tomorrow. We do NOT want this chemo in her system. Get in, get out. She’ll also be chewing on ice before, during, and after the administration of Melphalan. The reason for this is because, normally, you get mouth-sores (so bad that you have trouble breathing). What doctors discovered, though, that something as simple as chewing ice was enough to completely eliminate this very serious side effect from happening at all! What the ice does is it constricts the blood vessels in the mucus membranes of your mouth. Significance? The more constricted the blood vessel, the harder it is for the Melphalan to get circulated through that area. THEREFORE, ICE=GOOD!
Other than that, her room is MASSIVE. Its enough for two patients, but because of the unique circumstances of this ward (zero immune system), you aren’t allowed to share your room with other people because of the risk of spreading germs, etc.
Tomorrow is a big day, will keep you updated.
I hear you fretful in slumber
In March of 2007 I was at my monthly oncologist appt for routine labs. I had previously had creatinine levels in the 0.8-1.0 range. Looking back in my records my creatinine on January 2, 2007 was 0.9. January 30th it was 1.0. February 27th it was 1.5. March 30th it jumped to 4.0. At this last level my doctor advised me he was going to admit me to the hospital.
At this time I had been on Biaxin, Revlimid and Dexamethasone for three months with not a very dramatic response. I had also received Zometa recently and had been on Ibuprofen. While in the hospital I was diagnosed with Acute Renal Failure (ARF). I was put on i.v. fluids and my chemotherapy was changed to Velcade. I also had a kidney biopsy performed which revealed I had “myeloma kidney”. My doctors call was to have me receive plasmapheresis treatments.
I first had to have a catheter inserted near my collar bone. The catheter had two lumens. One took the protein out and the other replaced it with albumin (I think Beth, I’m not 100% sure). I had five treatments, two as a hospital patient and the other three as an out-patient. It was an amazing experience. I was connected to this fairly large machine that had buttons, dials and lights along with the tubes that were connected to my catheter. The process took between 60-90 minutes. They can adjust the speed of the machine and it was necessary to do this a little at a time.
The process was painless. I do remember I was chilly during the transfer. They warmed the albumin before it was introduced to my system. They did tell me I might experience tingly sensations around my mouth but I never did.
During the process you could read, watch tv, listen to tapes or sleep. The nurse was there with me during the total procedure.
Each day I had treatment they took my labs and my creatinine continued to improve.
In September I did a SCT and my creatinine is now at 1.9.