We had our first meeting of the Young Survivors Group at Steeplechase last week. There were two other survivors plus our facilitator. It’s probably always going to be a small group, but we figured it was better to just get it going. The group is open to survivors of all cancer types and stages who are under age 40 or 45. We plan to have some support group type meetings where we talk about cancer in general as well as how it effects life as far as parenting, marriage/dating, working, finances, etc. We are also hoping to have some more social events like getting together for dinner with spouses and kids. Of all the support groups I’ve been to so far, this one has been the best fit. The two other women who attended have kids the same age and live only a few miles from me. We’ll be meeting again in a few weeks for a formal group session, but plan on meeting for coffee or playdates too. I am working on a flyer for the group; if you know anyone who might be interested, let me know and I can give you the meeting time/place.
Radiation May 23, 2013
I’m on day 3 of 10 of radiation to my left hip and thus far it has been uneventful. They mark the area with tattoos and Sharpie markers so it looks like someone was trying to work out a geometry proof on my hip. I have not noticed any change yet in the pain, but I think it will be at least the middle of next week before it improves.
10 things that make me happy May 20, 2013
There is a Blog Every Day in May Challenge going around on the internet right now.
Since it’s May 20th, I guess I sort of missed the boat. But I thought it might be fun to cherry pick a few of these topics to write about, so today I’m sharing my list of things that make me happy, in no particular order, and certainly not exhaustive.
1. Hubby/sister/kid/friend time. So many things going on in life, it sometimes seems like you have to sneak this in.
2. My boys jokes – especially when they don’t make any sense.
4. A good massage.
5. Looking at old photos.
6. Party planning. Any party, even if I don’t get to go.
7. Afternoon naps on a rainy day.
8. Playing board games with my boys.
9. Hiking in the woods.
How about you?
Starting radiation next week May 16, 2013
It’s been a busy week so I’m just getting a chance to post an update. Last Friday I had an appointment with the radiation oncologist to discuss possible radiation to my L hip area that showed progression on the MRI. The doctor reviewed my scans and said that it would definitely be a good idea for me to have radiation now. She explained that fighting cancer in the bone is like trying to weed a garden; it’s much easier to do when there are just a few areas.
There is a limit to how much radiation you can have to each area of the body and after this treatment I will not be able to have this area radiated again. It’s been only a year since I had radiation in this same spot, so I’m a bit concerned about recurrences in the future and how that will affect my mobility. The doctor said that since the cancer is in the pelvic bone and not actually the joint, future problems in that same spot would not make me unable to walk, but would just cause pain. My problem, of course, is that to keep up with the boys I need to be able to walk a LOT and walk quickly. Ugh.
So I am focusing on what I can do to minimize problems – taking more calcium and vitamin D and continuing to get Xgeva (a bone building injection). I’ll start radiation next Tuesday and have ten sessions, finishing up in early June. Radiation is painless and ten sessions is not enough to cause any burns so the treatment itself should be easy.
In the meantime, I have been taking Percocet for the pain. I also got a cane and applied for a handicapped parking permit. I don’t expect I’ll need either of those very often, but I’ve got them if I want to go anywhere that’s crowded or requires a lot of walking.
Spa day with my sister May 6, 2013
Enjoying a great day at the spa with my sister. We had a package with three services. We both had a massage and warm salt scrub. I also had a mud treatment and she had Reflexology. The salt scrub was fantastic. Making up for my time in the un-spa aka hospital.
Unplanned trip to the hospital- but fine now May 5, 2013
Cancer interrupted my vacation. Ugh! I woke up Saturday morning at my sister’s house with a headache. We had planned on going out for brunch before joining some of her friends for a clothing swap. But before I could get in the shower I started vomiting and couldn’t stop. We headed for the hospital and called the doctor along the way. I was admitted overnight and blood tests, a CT, and MRI were all fine. My doctor was worried about cancer spreading to my brain because headache and repeated vomiting are symptoms of that. Luckily my brain is fine. We still don’t really know what caused the vomiting but it might just have been dehydration and/or migraine. I was discharged this morning so today we restarted our girls weekend. We had lunch and did some shopping. Spa day will be tomorrow.
Bone progression May 3, 2013
My doctor just called to let me know that the MRI showed progression (more cancer) in the bones. I now have 3 lesions in the iliac or pelvic bone, 2 on the left and 1 on the right. The left side lesions were already there but they are growing. I’m not really surprised because I felt it.
Dr. T said this kind of a mixed response, where a treatment works on one area but not another, is not uncommon. She recommended that I continue taking Xeloda since it is working great on the liver, and that has to take priority over the bones. So next week I’ll meet with the radiation oncologist to talk about getting more radiation to my hip. I know there is a limit to how much radiation you can get to a particular part of the body, but I need to find out what the limit is. Also I need to find out advantages/disadvantages of doing radiation sooner vs later. In the meantime I have three different drugs I can use if my hip is bothering me – naprosyn, percocet, and tylenol with codeine.
Not a super way to start my weekend, but I am in the airport right now on my way to a fun time with my sister in Florida. Have a nice weekend.
MRI today May 2, 2013
Got an MRI of my left hip today to see what’s happening there. I got jabbed just twice today. Here’s my supercool bandage to prove it.
The MRI machine is really loud and makes a lot of people anxious, so the tech offered me headphones with music. He put on please-don’t-have-a-panic-attack Enya. The machine was kind of enough to provide the percussion section with noises that sounded like car horns and video game machine guns. Lovely. For a hip scan they also put a foam block between your feet, a blanket over you, then duct tape around your feet to hold them together. That sounds crazy but is so much easier than trying to hold your legs in an odd position for 45 min. The radiologist was reading the scan as I left, so I think I should have the results tomorrow.