Apology

I have struggled with this update for several days. I have written it in my head numerous times. Here's the thing, last Thursday we received bad news and I updated my blog based on emotion....I did not give myself ample time to digest the information. I sincerely apologize to anyone I have caused unnecessary panic or fear or any other emotion.

On Friday Jim and I went back to the Dr's office to have my first round of the new chemo treatment. Ilsa, the nurse practitioner who gave us the bad news the day before was sitting in front of me before I actually sat down. She wanted to go over what happened the day before along with the side affects of the new treatment. The side affects are mostly the same from one chemo to another be they have to be reviewed every time.

After that we started discussing the results of the CT scan again. She said we have options, it is just a spot on my liver which she demonstrated as being very small with her fingers. She told me 'this is not a death sentence' which is what I called it immediately after she gave us the update on Thursday. She told me I will be here to see my granddaughter born and wear the new dress we bought her and hold her lots of times. Jenn is due Feb 1 or may be induced on Jan 25. This is not to say that I will die right after that time frame but trust me, I let my emotions get the better of me and had myself convinced that was EXACTLY what it meant.

Neither Ilsa or Dr Rooney will discuss 'time'. They have both told me every time I've asked (five times now) we just don't know. The fact that we have options tells me they are not giving up and I shouldn't either. I don't think of myself as giving up, I was overwhelmed with the news on Thursday, read my blog from Tuesday, everything sounded good so the update was completely unexpected.

Just so everyone knows, I am having a brain scan done tomorrow at 3:15. Simply because the last time I had one was September.

So, I would like to again apologize for how I posted and how it may have come across as you read it. Anyone who has ever worked with me knows how fond I am of this statement 'Presentation is key.'

My presentation this time stunk, I am very sorry.



Jamie

CT Scan results not good news

The tumor in my lungs has increased.
The mass in my abdomen has increased.

The cancer has spread to my liver.

The Dr said we still have options and we will start a new medicine tomorrow.

Please pray for me that I am able to be here when Jennifer has her baby, she is scheduled to be induced on Jan 25. 19 days.

CT Scan no news is good news

Today is one week since my CT scan and I have heard nothing about the results so I called the office. The nurse told me they don't typically call if there is 'nothing outstanding' so, no news really is good news. She said she would put a note in my chart asking Dr Rooney to review the results and let me know either way. He may have reviewed them already....she didn't say he didn't just that she would ask him to review them and let the nurses know what to tell me.

My upcoming chemo schedule:

Thursday January 6 1:00
Thursday January 13 1:40
Thursday January 20 $1:30

Oct 15 was my last blog update. At that time my treatment was changed to a 3 week chemo/1 week off cycle. I am still in the same cycle which is really good. The dosage of the medicine was recently increased but the cycle remains the same.

I have good and bad days and some in between. The bad days can be brutal, I usually find myself in bed for the entire day using all my energy to turn my head. Those bad days are few which I am thankful for. An 'in between day' is part good part bad (which is probably obvious to you)but the bad part is much milder than a bad day.

I am back to bowling and am really happy about that. It gives me something to look forward to, social activity and physical activity all at one time. I did not bowl the month of November, there were several bad days that month.

Jim and I spent Thanksgiving by ourselves, Jenn had dinner at her house and Jimmy and Josh went there. I was not feeling up to going out that day so we stayed home. Jim made a turkey dinner for us and he did a fantastic job. I spent the day laying on the couch watching him. I honestly don't know what I would do without him. He does everything for me, housework, laundry, shopping, cooking, name it he does it.

We had a great Christmas. I actually went Christmas shopping three times which Jim and I thought was great. Considering how little I get out and how much energy it takes it was pretty good. I know how much my body can take and I know when to stop.

The kids came over Christmas Eve to exchange gifts and it was really a nice day. What made it even better was I was feeling good that day so I was able to be up and around and participate instead of watching from the couch. For anyone who has a FaceBook account you can go see some of our Christmas pictures.

This year will be the first year in many that we will be staying home for New Year's Eve. Normally we would be in Boston and even with the good weather they are predicting (45°) I don't think I would be comfortable in Boston. I never know when the 'bad' is going to hit. So this year we will stay home, order Chinese (doesn't everyone??) and watch the 3 Stooges Marathon until we fall asleep...which most likely will be 9:30...lol

As far as my health the Dr tells me I am doing very well. This treatment plan is working well. I had a CAT Scan done on Tuesday of this week and had planned on calling for the results today but SURPRISE! the Dr's office is closed today. I will have to call on Monday. For now, I am going on the theory that no news is good news. I believe they would have called if there was something significant going on.

I hope the New Year brings all good things not just for me but for everyone.
Thank you for your support as I go through this difficult journey. A note, email or card always puts a smile on my face!

I am going to try to update more frequently as it is next to impossible to recall everything I've been through in 2 1/2 months.

Happy New Year everyone!

New medicine and cycle plan

Based on the changes I've gone through in the last four weeks and the results of the CT Scan we have changed the cycle and medicine again. The pain in my stomach is a mass and the most recent medicine did not work well on it. The medicine did shrink the tumor in my lung but the mass grew larger. The mass is ON the colon, not in but on.

It is a three week cycle this time, one day a week for three weeks, one week off. Between Cycle three and four there will be another CT Scan to determine progress and plan of action, continue as is or change again.

My white blood count went up from 9 to 18 but in light of the fact that I've technically had no treatment for four weeks it was almost expected. The expectation is it should drop next week. The cancer markers took a HUGE jump up from 48 to 122. This was expected. I am not sure how long it will take for them to go down but as long as they are going down I am ok with it.

Anita (my chemo nurse) told me that 99 out of 100 patients have no issues with this medicine. One in 100 does in the first, second and possibly third treatment. Of course, I am the one in 100. The medicine targeted the mass directly and immediately increased my pain. This is actually a good thing..it means the medicine is doing its job. Painful for me for a period of time but I will deal with it if it shrinks the mass.

and to end the rough chemo treatment as we were walking out the door an older woman reached out to me and said 'Cancer survivor?' I said I am battling cancer.
she said 'and you will beat it. I am a 10 year survivor and I know you will beat it. You are beautiful'


The right person comes along at the right time....

Long stressful wait for results

I had the CT Scan done on Tuesday, Sept 28, blood work on Friday Oct 1 and met with
Dr Rooney on Tuesday Oct 5. The wait in between was long and stressful. I felt lousy physically and emotionally a wreck. Because I am not a Dr and I have nothing to do to occupy my time I spent most of it thinking all the possible negative things.

So, the outcome.

I do not have four tumors. That is a gross misunderstanding of information that I have been carrying for 6 months now. There is one in my lung and it has gotten smaller and that is just about all we discussed about that tumor. There is a second tumor/mass that is in behind the intestines, in front of the spine and below the pancreas. This is the ONE that I referred to as in my stomach. Jim referred to it as in my back. I believe it is in my abdomen. I will confirm next visit. But the fact of the matter is it is only one tumor.

The brain tumor brought the best news. The tumor presents itself in a specific manner on the CT Scan. When the tumor is gone it leaves behind scar tissue which also presents itself in a specific manner on the CT Scan. And, they are exactly the same. So the Dr's take the scan and my physical appearance, cognitive skills and determine if what they are seeing is the tumor or scar tissue. In my case Dr Rooney feels confident it is scar tissue. There has never been a problem with my cognitive skills and believe it or not the fact that I am bowling is a huge factor in the determination.

So, now that I have more information and less stress, I believe part of why I've felt lousy for the past month or so is because the medicine stopped working. I called to let the Dr know my stomach pain returned a week after my markers went up and now it's been over three weeks without a treatment. We've had to increase the pain med dosage to help with that. I will start a new treatment plan next week. Three weeks with one treatment each week, one week off then three weeks with one treatment each week, one week off. The blood work will actually determine how long this goes on for. I am hoping the new medicine works, it was really nice not having any pain.

Another two weeks and I will be off the steroids which is good. I asked the Dr about foods and drink, what should I avoid etc. I specifically asked about caffeine/coffee and he said 'If you like it drink it. As far as I am concerned it is one of the four major food groups'!! Guess we know where he stands on coffee.

That's it for now.

No single digits

went the wrong way....markers went from 18 to 48

CT scan next Tuesday

Very Discouraged