Hello everyone. I see it has been quite a long time since I last posted. A lot has transpired from the last post. I am now approximately 29 months post treatment. The last oncology and surgical visits I had they looked at me and said "well we are not quite sure what to do with you now"... the NCCN guidelines simply suggest watching the patient for symptomatic issues and that is that. I may not have any more CAT scans but I may argue that point and ask for one a year for at least two more years. The question here is most patients when they reach beyond the two year mark, the odds of recurrence lowers dramatically. I neglected to ask however what the are the odds of metastasis to the typical areas - liver and/or lungs.
I suppose I am being a little paranoid in that two of my cohorts on the cancer forum I joined have recently passed away within a month of one another, both having cancer mets to their liver. One a talented musician and writer of music that has been published and another a loving veterinarian. Cancer does not have any prejudice at all does it?
The good side of the last year or so is I have a beautiful grandson named Evan who fills my heart with joy every time I look into his face. I have been crafting and doing shows and selling albeit not at a hectic pace but rather at a snails pace which suits me just fine. Have been doing a little traveling. Had some family issues that are seeming to resolve. I wish I had more to give you but in essence it has been blessedly boring.
That is it for now. I'm thinking of writing another blog post treatment and how life has changed since then. I am also fully retired. Hope that you all still coming in here to read this are doing well. Be well, Marilyne
Saturday, February 2, 2013
Monday, December 26, 2011
Merry Christmas and Happy New Year
Been a few months since I posted in here so I thought I would write an update over the holidays. Scans have thus far been coming back clean which is a blessing in itself. I am now 16 months post treatment which is still in the 'so so' zone...I guess up to 18 months is a critical period and then two years is another anniversary milestone and three is another. So I still have a way to go but as it stands all seems to be okay on the physical front.
I keep forgetting that I am 64 years old and I expect myself to be jumping around and full of energy getting things done but I can no longer do that. I tired easily. That frustrates me as I my mind wants to do things but my body is saying heck no, no way! Oh well.
I did recently find out I am going to be a grandmother - my oldest son and his wife are expecting and due in mid May of next year. Very exciting news. I'm thrilled to be here as part of all the updates and seeing things develop. The best is watching how my son is reacting to all of this. It is very touching.
That is about it for now. I have an ultrasound next month which should be uneventful and my next round of scans and such will be in March. To all who still read this, Happy holidays...I wish you nothing but love, peace, happiness and joy this holiday season and for the new year. Love, Marilyne
I keep forgetting that I am 64 years old and I expect myself to be jumping around and full of energy getting things done but I can no longer do that. I tired easily. That frustrates me as I my mind wants to do things but my body is saying heck no, no way! Oh well.
I did recently find out I am going to be a grandmother - my oldest son and his wife are expecting and due in mid May of next year. Very exciting news. I'm thrilled to be here as part of all the updates and seeing things develop. The best is watching how my son is reacting to all of this. It is very touching.
That is about it for now. I have an ultrasound next month which should be uneventful and my next round of scans and such will be in March. To all who still read this, Happy holidays...I wish you nothing but love, peace, happiness and joy this holiday season and for the new year. Love, Marilyne
Wednesday, September 14, 2011
One Year
A few days ago I had what amounts to my one year checkup. They did an ultrasound only on the area where the gall bladder was to check on an air bubble they thought was there and also viewed my right kidney at the same time. Bloodwork was great. All levels are back up. Kidney not doing as well though and the oncologist thinks it might be from radiation damage. I'm to see a nephrologist (sp?) kidney doctor and when they did further tests she felt it might be a kidney infection so gave me antibiodics and told me to see a urologist too. They obviously cover all bases.
I do not have to have a scan in December which both elates me and makes me a bit nervous. Should one be done to scan my whole body in case spawn of harvey shows up somewhere else? I guess it was my safety net and not having that makes me a bit nervous. At the same time it makes me feel more normal. I even renewed my quilt mag subscription for three years. Keeping that positive attitude.
Just thought I would update everyone still reading this and to add to my 'diary' of sorts. Hope that this finds everyone well. Be well, Marilyne
I do not have to have a scan in December which both elates me and makes me a bit nervous. Should one be done to scan my whole body in case spawn of harvey shows up somewhere else? I guess it was my safety net and not having that makes me a bit nervous. At the same time it makes me feel more normal. I even renewed my quilt mag subscription for three years. Keeping that positive attitude.
Just thought I would update everyone still reading this and to add to my 'diary' of sorts. Hope that this finds everyone well. Be well, Marilyne
Thursday, August 11, 2011
Internal Ultrasound
As everything else with this disease...there are constant reminders that it was there and can come back in the early years after diagnosis and treatment. Yesterday I had my ultrasound which I found I should have been having every 3-4 months or so and missed by 9 months. Woops. Lots has gone on, my surgeon dislocated his elbow and was out of commission which pushed some appointments around and farther in the further, leaving open some unanswered questions and followups. All is back on track now.
The ultrasound was uneventful (albeit painful) but to see the screen and see absolutely nothing was just a blessing. I was elated. The doctor that does this is wonderful...he actually says, this is what I see, this is what will happen or as in yesterdays case...it is empty, I see nothing. Yeah!! Then my husband surprised me by taking me to my favorite wholesale fabric place that was only a few miles away and I actually bought some fabric...to me this was a perfect day. Okay, maybe some ribs from Famous Dave's would have topped that off. lol. Thank you for reading this, for listening, for praying, for being with me during my ups and downs. So appreciated. Be well everyone, Love, Marilyne
The ultrasound was uneventful (albeit painful) but to see the screen and see absolutely nothing was just a blessing. I was elated. The doctor that does this is wonderful...he actually says, this is what I see, this is what will happen or as in yesterdays case...it is empty, I see nothing. Yeah!! Then my husband surprised me by taking me to my favorite wholesale fabric place that was only a few miles away and I actually bought some fabric...to me this was a perfect day. Okay, maybe some ribs from Famous Dave's would have topped that off. lol. Thank you for reading this, for listening, for praying, for being with me during my ups and downs. So appreciated. Be well everyone, Love, Marilyne
Monday, July 18, 2011
Continuing on the Journey
Hello everyone. Had my follow up colorectal surgury visit and that went well. They are so aggressive about following the aftermath of this cancer. I am thankful for that but so tired of doctor visits and the splunking and prodding. Next is an ultrasound in the next few weeks as part of the one year follow up practice. Then I get a reprieve (hopefully) for a few months and in September more scans, tests and prodding. Next month on the 18th marks one year since treatment ended. One year went by awfully fast although it seemed to go very slowly during treatment. My celebratory anniversary however is Dec 18th. That was when the biopsy confirmed no cancer was there. And so the journey moves on and I keep my seat belt on in case it gets bumpy but so far it has been a very pleasant ride. Thank you all for praying and being there for me and Thank you God for the healing grace you bestowed upon me. Be well, Marilyne
Sunday, July 3, 2011
Thankfulness and Guilt
Hello Everyone - I was reading in my cancer sites (two sites I frequently go into where I can commiserate and vent to a cohort group that is going and has gone through what I have) and reading some of the trials that others are going through made me feel both thankful I was not going through what they are and guilty to feel thankful at the same time. I'm not entirely sure I know what that means. Why should I feel guilty I do not have the same trials? I'm not sure why. Perhaps because it brings this disease and possible outcomes to reality and I fear that - perhaps the guilt is only a manifestation of the fear.
I know I peruse the forum threads and when someone who has been in remission or has had clean scans over a few years suddenly develops another cancer or a metastases somewhere else, I actually panic. When does this fear of recurrence end? Perhaps it never does. Perhaps the key is to learn to 'live' with the possibility of recurrence or metastases or even a new cancer. While I know that sounds maybe a bit defeatist in the sense I'm not thinking "I'm Cured!!!" lets move on - it is something I think I will live with for a while longer and perhaps for the rest of my life. Once you have been hit with the cancer lightening bolt, you tend to be afraid to go outside for fear you will get hit again. Normal fear. It's when the fear becomes irrational that I will need to check myself at the door and re-evaluate my thinking. So far my fear is normal. I intend to keep it that way. I intend to do everything I can to be healthy. What happens after that, happens.
Today is the day before the fourth of July. This year went by so quickly. Next month on the 18th will be my one year anniversary since treatment. One year. All the burns and itching and pain and illness of treatment are a faded memory now (although when I read of others going through it, the memory creeps back quickly). I will be lighting a sparkler tomorrow -- I do that every year -- to commemorate this holiday. Even last year, I went on the deck in my extra large boxer shorts (worn to keep fabric away from the burns and sore skin from radiation) and lit a sparkler and watched as neighbors set off their own fireworks.
Happy Fourth Everyone. I'm thrilled that I'm here to celebrate another one. Hugs and Love, Be well, Marilyne
I know I peruse the forum threads and when someone who has been in remission or has had clean scans over a few years suddenly develops another cancer or a metastases somewhere else, I actually panic. When does this fear of recurrence end? Perhaps it never does. Perhaps the key is to learn to 'live' with the possibility of recurrence or metastases or even a new cancer. While I know that sounds maybe a bit defeatist in the sense I'm not thinking "I'm Cured!!!" lets move on - it is something I think I will live with for a while longer and perhaps for the rest of my life. Once you have been hit with the cancer lightening bolt, you tend to be afraid to go outside for fear you will get hit again. Normal fear. It's when the fear becomes irrational that I will need to check myself at the door and re-evaluate my thinking. So far my fear is normal. I intend to keep it that way. I intend to do everything I can to be healthy. What happens after that, happens.
Today is the day before the fourth of July. This year went by so quickly. Next month on the 18th will be my one year anniversary since treatment. One year. All the burns and itching and pain and illness of treatment are a faded memory now (although when I read of others going through it, the memory creeps back quickly). I will be lighting a sparkler tomorrow -- I do that every year -- to commemorate this holiday. Even last year, I went on the deck in my extra large boxer shorts (worn to keep fabric away from the burns and sore skin from radiation) and lit a sparkler and watched as neighbors set off their own fireworks.
Happy Fourth Everyone. I'm thrilled that I'm here to celebrate another one. Hugs and Love, Be well, Marilyne
Thursday, June 30, 2011
Never a dull moment
Just when I think that I have a few days of respite, the roller coaster in my life shows me that I have no control -- or perhaps God is telling me that control with this disease is not going to work. These little 'blips' on the radar tend to play havoc with my mind and body and while I hate it, it keeps things in perspective.
Had my requisite mammogram last week, like the diligent woman I am. They called me back the next day to schedule an appointment because they saw a 'thickening' that wasn't there the year before. I just thought, okay, here we go again. Buckle the seat belt. Say another prayer. Take a deep breath. Say to self, "self, you cannot change the outcome of this - it is what it is - do not waste days withdrawing and trying to gather strength for something that may not even happen. Enjoy your days anyway." Of course I didn't listen to myself.
Five days later I had the mammo redo (which is much worse than the regular mammo unfortunately because they have to focus on specific areas. I had an odd calcium deposit right below this thickening which almost looked like an upside V pointing quite nicely to the mass they wanted to view. That helped the radiologist focus in the right spot. I was then told to sit outside with my little bag of clothing (in case there was an issue, I would have to go for an ultrasound). Another woman was out there with her little bag and in a hospital gown like me. Then another came out, same bag, same hospital gown but a robe. Modesty prevails in any situation. The technician came out to say the radiologist/surgeon was doing a biopsy but would read the mammos shortly, maybe 15 minutes. A few minutes later she came out and called me in. I kept thinking, hmmm, the person before me wasn't called and the person after me wasn't called. My heart started pounding and my mind rationalized all types of things and I wondered if the cancer decided to attack me in another area. I hate this disease. I hate being so paranoid. I hate the fact I worry about every pain and ache now when I didn't give it a second thought before. I hate that I lose days of my life in worry. I hate that I have no control.
She takes me in the room and shuts the door for privacy she says and I sit down as my legs are wobbly. She tells me everything is fine, not to worry. It was simply thickening and no suspicious mass. Come back in a year. Relief washed over me. She started to apologize for making me go through it all and I said no, I am glad that they are diligent and do this. Best to catch this early and be sure. As I started to leave I realized the other two women in the lobby may have different news and I walked out quickly. Not smiling, not making contact. Whether that was the right thing to do or not, I do not know, but I felt if I was happy and smiled I did not know what news they would get and did not want the moment that is quite frightening to be the bouncing off board for my good news. I said a prayer for the two of them and met Rich outside. I was able to breathe again. Able to plan again. At least until my visit to the colo-rectal surgeon on July 15th. Another respite. Thank you God.
Be well, Marilyne
Had my requisite mammogram last week, like the diligent woman I am. They called me back the next day to schedule an appointment because they saw a 'thickening' that wasn't there the year before. I just thought, okay, here we go again. Buckle the seat belt. Say another prayer. Take a deep breath. Say to self, "self, you cannot change the outcome of this - it is what it is - do not waste days withdrawing and trying to gather strength for something that may not even happen. Enjoy your days anyway." Of course I didn't listen to myself.
Five days later I had the mammo redo (which is much worse than the regular mammo unfortunately because they have to focus on specific areas. I had an odd calcium deposit right below this thickening which almost looked like an upside V pointing quite nicely to the mass they wanted to view. That helped the radiologist focus in the right spot. I was then told to sit outside with my little bag of clothing (in case there was an issue, I would have to go for an ultrasound). Another woman was out there with her little bag and in a hospital gown like me. Then another came out, same bag, same hospital gown but a robe. Modesty prevails in any situation. The technician came out to say the radiologist/surgeon was doing a biopsy but would read the mammos shortly, maybe 15 minutes. A few minutes later she came out and called me in. I kept thinking, hmmm, the person before me wasn't called and the person after me wasn't called. My heart started pounding and my mind rationalized all types of things and I wondered if the cancer decided to attack me in another area. I hate this disease. I hate being so paranoid. I hate the fact I worry about every pain and ache now when I didn't give it a second thought before. I hate that I lose days of my life in worry. I hate that I have no control.
She takes me in the room and shuts the door for privacy she says and I sit down as my legs are wobbly. She tells me everything is fine, not to worry. It was simply thickening and no suspicious mass. Come back in a year. Relief washed over me. She started to apologize for making me go through it all and I said no, I am glad that they are diligent and do this. Best to catch this early and be sure. As I started to leave I realized the other two women in the lobby may have different news and I walked out quickly. Not smiling, not making contact. Whether that was the right thing to do or not, I do not know, but I felt if I was happy and smiled I did not know what news they would get and did not want the moment that is quite frightening to be the bouncing off board for my good news. I said a prayer for the two of them and met Rich outside. I was able to breathe again. Able to plan again. At least until my visit to the colo-rectal surgeon on July 15th. Another respite. Thank you God.
Be well, Marilyne
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