First I wanted to say something that I have been thinking about for the last few weeks. I talked to Chris and he understands and I hope all of you do too. For as long as I have been posting these blog entries I have been trying to be whimsical and positive in my writing. Basically trying to keep a good tone on things so that my blog entries weren’t so depressing even when the news wasn’t good. Since my health has gotten worse and I’ve started coughing up blood I am finding it more and more difficult just to form thoughts, since it takes all of my effort just to be able to breathe properly these days. So you’re going to notice that starting now I am just putting the information out there. I’m not trying to make it sound like anything more than it is. Just the facts, if you will.
Before the doctor came in Chris coaxed a smile out of me.
I saw my oncologist yesterday and we discussed my current situation. In particular we went over the results of the CT Scan. If you read Chris’ previous blog entry you’ll know that the results posted raised more questions than answers. There was some stuff in the report that didn’t make much sense to us. Here’s a summary of the whole thing. This isn’t everything (the report was rather lengthy).
- There is redemonstration of mildly enlarged lymph nodes in the mediastinum and hila. The size of the lymph nodes has mildly diminished.
Here’s a perfect example of why we were confused. The report mentions the lymph node once again being enlarged, yet then says the size has diminished.
- Multiple pulmonary masses are redemonstrated. Overall, these have increased in size and number.
To us this is pretty much self-explanatory. There are more tumors and they’re getting bigger.
- Bilateral trace pleural effusions are redemonstrated.
- Multiple bony metastases are redemonstrated in the thoracic spine. These have increased in size and density. Redemonstration of a subacute fracture of the right sixth rib.
The section on the spine caught me by surprise. I’m still unclear on that and my oncologist can’t confirm that at this time and is ordering a review of this whole report. However, the subacute fracture was confirmed and may explain some of the pain I am having in my rib cage area. The current theory is that the rib was possibly fractured from coughing, which is quite severe lately. However the fact that it is listed as redemonstrated is still a mystery since there was no prior report of this. Again we’re still waiting for a review of the report.
In maintaining my current pain, internal bleeding and other symptoms I went immediately from two to six prescriptions to handle the various symptoms I am dealing with currently. As you can guess, being more medicated is going to make me even more out of it and make it harder to form coherent thoughts, but I guess I can’t think very well when in severe chronic pain and coughing all the time either. In the last 6 months I have lost over 40 pounds just due to lack of appetite and chemotherapy during that time.
Speaking of which I am being referred to Hospice. Things have finally gotten to a point where my oncologist feels I could benefit from the more direct management of my pain and medication via their services. Right now it’s a referral and until we have an interview I don’t really have any more information on what will happen. More on that later.
I received another beautiful gift yesterday. A while back I was trying to sort out some of my crafting supplies and donated a bunch of quilt squares to a friend. She surprised me with a gorgeous quilt for me. She also let me know in her lovely card that the quilts that she makes will given away for others to enjoy. Steph you are an awesome and very talented friend! Thank you!
New Quilt
Super cool quilt 🙂 … Personally, I say being med head is way better than loads of pain, but I’m a sissy when it comes to pain. Hope you get some reprieve from your rib pain. Thank you for the update 🙂 Glad Chris was able to get a smile out of you.
You just go for it lady! This is your blog by you, for you, and about you. I guess everyone reading this blog has their own comfort level with what you present to us at different moments, but if I had to make a reasonable guess, most all of us are all smiling a little smile for you on your good days and maybe saying a little prayer or thoughts for you on your not so good days. And the scale will be eventually sliding more towards the not so good as you have assured us. As to hospice, depending on who is running and staffing it, it can be a relief to have. We have Hospice of the Valley here and one of the coolest nuns we have ever met sits on its board.
As to pain meds, why hurt? You may get the occasional wag whining about getting stuck on pain meds, but in your situation, you can give them that sly smile and say (or at least think) really? REALLY? Are you tripping? Use them, as you see fit, that’s why god gave the chemists the brains to figure these things out……. but also be aware if they have not told you, morphine for one and also some others mess with the digestive tract and getting pretty stopped up (a topic you have previously mentioned) can happen, so watch out for that.
Otherwise just keep writing as you see fit, remember the stiff upper lip sh!t is for the Brits. Relish the good days and tell us about the bad ones. We are all out here for you, and if just reading your stuff and occasionally commenting on it shows the support you have and helps make your day, then keep on until you can’t…..
Frank
Joshua,
I had to get the smile before the doctor came in. I’m not going to get into the details of what I said to get her to smile, but I do like to keep her on her toes. Getting a smile each day is important to me.
Frank,
Wendy is an amazing lady. She’s always concerned about making others uncomfortable and I have been telling her for quite some time that she shouldn’t do that. Other people being uncomfortable is their issue, not hers. She doesn’t tell anyone what’s going on who doesn’t want to know.
It’s funny you mentioning the pain medication and someone mentioning addiction. That very thing happened at our local Walgreens when she was getting a prescription filled. The pharmacist looked at her in awe at one of the prescriptions and asked her if she realized these pills were habit forming. Wendy looked right at her, smiled and said, “I’m dying so I don’t think that’s going to be a problem.” That pharmacist didn’t have anything else to say then.
With Hospice we’re hoping there will be more control of the pain over time and I have to admit to being concerned about the right people being assigned to work with Wendy. I guess we’ll find out more later.
Hey Jo,
Thanks for your posts as always – our thoughts are ever with you.
“There is redemonstration of mildly enlarged lymph nodes in the mediastinum and hila. The size of the lymph nodes has mildly diminished.” As someone mentioned in the Parallax forums, it’s probably that compared to your other scans, the lymph nodes are smaller than they have been but are still larger than normal. Lymph nodes are essentially where your white blood cells/immune system operate out of, so it seems like they’re still working on fighting the battles!
Pleural effusions means you have fluid in the lungs – it is probably why you’re not able to breathe as easily…though at the very least it is considered “trace” amounts at this point.
Sometimes, when the cancer has gotten into the bone, it also causes the bones to become weaker, so the fracture could be a combination of the cancer as well as the coughing. It doesn’t make it better, but it’s an unfortunate part of the progression…
And please please do get Hospice on board – they are not about death, but about comfort. They will help you be more comfortable through the rest of this process. http://changingaging.org/blog/thats-greek-to-me-what-you-wish-you-knew-about-hospice-care/ – is a blogpost my friend wrote. She’s involved in hospice care and hopefully the post has some good information for you. Please get their support as soon as possible, for *your* sake!
Kindest Regards -Addie
Way To Go Wendy~~~~~ I have always loved your sense of humor. Bet that pharmacist will think before speaking next time~
Love you Girl!
Hi Wendy,
Your level of articulation under circumstances is a total credit to yourself and the real people that love you so much (Yes Mr Savage that is you) what a loving couple. You have freely shared with us the ups and some of the downs. Chris is forever there with you when we can’t be. We love you both equally.
Love to both of you
Mike & Sue XxxxxX