Gosh, what a difference a week or so makes...the last time I felt really good was really a couple of weeks ago, hard to remember. Suddenly, eating was difficult, breathing became difficult and I had a cough and a big old swollen gland, that they felt was leaning on my trachea and making breathing difficult. The clinical trial was cancelled, radiation of the gland/node was started the next day and the current nightmare was underway. They checked my blood at day 9 or 10 of radiation, and called me that evening from the MGH ER, telling me that I needed to come in and be admitted due to the totally out of control blood work numbers. I think Keith has gone into some detail regarding this, so I won't repeat, nor can I at this point....it has all become such a conundrum of some of the best medical minds around trying to get to the bottom of this. When I arrived here on Wednesday evening---Peg and Cam brought me---little did I know that it would be such an ordeal. I feel as if I have aged a good 15 years+ in the past week. It has been a difficult week, and as suspected, difficult to stay optomistic and upbeat when I basically feel like a piece of crap. I am unable to walk without assistance---do anything without assistance--YIKES. Anyway, hopefully I'll be heading home on Monday, after getting some nursing assistance in place and some PT accomplished before then to up my strength. I had a blood transfusion last night that I thought might give me more of a boast than it seems to have done, but....whatever I guess. I'm off to take a little nap, since I can barely keep my eyes open. Before I do that, let me just say that the care and compassion of those I have crossed paths with here at MGH--nurses, techs, physicians...has been exemplary and incredibile. I have a private room here that overlooks the city from the 20th floor, where the sun streams in in the morning. Keith has been with me since the morning after I got here and has stayed here with me every day and night. He has been my advocate in every phase of this and I would not have been able to do this without him, there is no doubt. It has been an honor and such a privilege to have him here, as we chat, discuss, cry, laugh, get things out on the table that must be addressed, talk about life, death and all that falls in between. It has been a blessing that has bloomed and grown and deepened and I am so grateful and thankful for this powerful gift.
Kristeen has held things together at home in Vermont during this Christmas season, with Maia--they've been on their own, sharing Keith with me down here in Boston, a tough time of year for all of this to be happening--they have truly given me the best gift--going with the flow and making this all work seamlessly (at least from my view!). They arrived on Tuesday night and are enjoying Christmas today in Plymouth at my home. Peggy is here with me today at MGH--bless her, she is the absolute best, giving up Christmas in Arizona with her children and grandchildren to be here with me...BFF are the best...
This afternoon my brother Ron, his wife Andrea and their daughter Mandy will come in for a visit, along with Keith, Kristeen and Maia. On Christmas Eve, last night--my sister Carole and her 4 were here, coming into the room singing as a dance troop, a Christmas melody....very wonderful to see and hear. I don't often get to see them all together too often anymore as the kids grow up and move on. It was so great seeing their joyous faces on the eve of a stressful day, but a day that usually brings the Christmas stress to an end and the actual enjoyment of the season is present. They brought me a great Patriots fleece blanket---I love it.
All right, enough is enough. My eyes want to close in the worst way....so I think I'll go with that.
Thursday, December 25, 2008
Monday, December 15, 2008
my arsenal is not only in the form of medicine....
Well, almost another week has gone by--the radiation treatments continue, I have 5 more to go. They are totally sapping my energy...what little I have left. Last night, I couldn't sleep, who knows why....but it was a long night. Peg and I went to MGH for the treatment and by the time I got home, I was just about comatose...just really done in, partially from not sleeping and also from the radiation. The sofa, my new BF, is where I spent the afternoon, snoozing and napping, actually a very pleasant way to spend the time. These days, it is those things that bring comfort and joy---getting real rest, eating something that actually tastes pretty good, feeling halfway decent for a good part of the time, and spending lots of times with family and friends--I've had a houseful and it has been great...better than great.
Keith left on Sunday, after being here for 11 days...I don't know what I'd have done without him...so unobtrusively helpful, wise, caring and loving. We got to have some serious talks, explored issues that must be spoken of, was able to come to some conclusions that needed to be reached, he played his guitar and sang to me, we laughed and we cried. It was the best of times...
It's hard to believe that Christmas is 10 days away. Everyone scurrying around trying to get their "thing" done, and in the midst of that, coming by to see me, calling, emailing, blog commenting, dropping by "goodies"... the timing of this little setback was not exactly timely. Peggy came from AZ and will miss Christmas with her family out there...The job search for Heather continues...just trying to get her signed up for services is challenging. Hopefully, by the end of this week, it will be totally underway. Heather is enjoying her time at home with Sydney (and Ralph of course:), but I think she will be happy with more to do.
All right, I'm off to bed, for either another wrestling match with the bedclothes or some needed sleep, hopefully the latter. I sleep with the oxygen, but my breathing is really quite a bit better. I'm on a steroid now, which also may interfere with good sleep. It's a crapshoot--never seem to know what kind of night it'll be, but the following day is totally dependent on it---that's how it seems anyway. The nodes that they are treating in my neck are definitely smaller today---I thought so yesterday also, but today--definite. So, a glimmer of hope that this thing is shrinking and getting ready for the next systemic chemo treatment, which will start after the first of the year....that's the plan at the moment anyway. Well, there seem to be no absolutely definitive plan at the moment...we're fighting this thing with the arsenal that is currently available and hoping and praying that one will work. For now, it is how it has to be....I have my days when I think in shorter terms than on other days, but for the most part, I'm still in there for the long-term fight...and am looking for more weapons to fight with.
Keith left on Sunday, after being here for 11 days...I don't know what I'd have done without him...so unobtrusively helpful, wise, caring and loving. We got to have some serious talks, explored issues that must be spoken of, was able to come to some conclusions that needed to be reached, he played his guitar and sang to me, we laughed and we cried. It was the best of times...
It's hard to believe that Christmas is 10 days away. Everyone scurrying around trying to get their "thing" done, and in the midst of that, coming by to see me, calling, emailing, blog commenting, dropping by "goodies"... the timing of this little setback was not exactly timely. Peggy came from AZ and will miss Christmas with her family out there...The job search for Heather continues...just trying to get her signed up for services is challenging. Hopefully, by the end of this week, it will be totally underway. Heather is enjoying her time at home with Sydney (and Ralph of course:), but I think she will be happy with more to do.
All right, I'm off to bed, for either another wrestling match with the bedclothes or some needed sleep, hopefully the latter. I sleep with the oxygen, but my breathing is really quite a bit better. I'm on a steroid now, which also may interfere with good sleep. It's a crapshoot--never seem to know what kind of night it'll be, but the following day is totally dependent on it---that's how it seems anyway. The nodes that they are treating in my neck are definitely smaller today---I thought so yesterday also, but today--definite. So, a glimmer of hope that this thing is shrinking and getting ready for the next systemic chemo treatment, which will start after the first of the year....that's the plan at the moment anyway. Well, there seem to be no absolutely definitive plan at the moment...we're fighting this thing with the arsenal that is currently available and hoping and praying that one will work. For now, it is how it has to be....I have my days when I think in shorter terms than on other days, but for the most part, I'm still in there for the long-term fight...and am looking for more weapons to fight with.
Tuesday, December 9, 2008
another harrowing week...made easier....
Thank you to all for your notes, your blog comments, emails, facebook wall comments, phone calls, long drives, flights across the country, your caring and your love that has surrounded me as these new challenges arise.
I met Keith last Thursday morning at MGH at the Radiology Oncology unit. I got mapped and what-not and had the treatment. The next day we met with Dr. Efstathious--let's just call him Jason, and he described the plan and the additions he had added to the consent form. He and Michaelson had gone over the scan again and decided to expand treatment to include some of the chest where there were nodes also. He was very thorough and detailed in his explanation and also went over the potential side effects. I was so glad Keith was there--a phrase I have continued to say over the past 6 days...it has been a joy for me, of course, and he has been such a help. They mapped the area again, which again took about 45 minutes of agony on the table---you can't move a muscle, and my back was again killing me. But anyway, the second treatment was accomplished and we went home. On Friday, at the third treatment, they again did extra pictures---I keep waiting for the quick visit they keep promising....finally happened on Tuesday. After Friday's visit, Keith and I actually did a little Chrismas shopping, had lunch at Panara and headed home. On Sunday, I had an appointment for Reiki, which was very helpful and relaxing, kind a a redirection of energy, massage, etc. Keith had lunch with his Dad during that, and then Keith and I headed over the Brenda's and watched the Patriots game against Seattle...we left before half-time--I was just tired and out of energy and out of breath. We watched a John Adams chronicle that I had taped--it was great. On Monday, treatment (each day at 10:40am, no treatment on the weekends), I had an appointment with the chiropractor, who worked a bit on my sciatic problem. It really seemed to help. MGH has me on oxycontin for the pain in the abdomen/sciatic nerve/back. It has been extremely helpful, as I have been unable to get at all comfortable in bed, enough to get any sleep, so I've been a walking zombie--more than usual...Keith and I met with Kara, the RNP on Monday--she came over from Yawkey to see us. She observed that the node in my neck was bigger, and that I was struggling even more with catching my breath. She added a steroid to the mix, hoping that it would help with the inflammation in my neck. Keith had emailed her on Sunday afternoon regarding my issues, and she emailed him back around midnight, telling him what she was putting in place. By Monday evening, I had arrangements for a visiting nurse (she came today), and oxygen had arrived and I was plugged in by Monday night. She also had the talk with me about life support and DNR issues. This woman is great. Kristeen and Maia arrived on Monday night also. Maia is staying at Kristin and Chris's in RI and gets to have an overnight with her sweet cousin, Addison tonight. They are great little friends and are having a blast together. Today got off to a harrowing start with constipation issues caused by the oxy, and other things. Heather and Keith both went in with me--finally for a short visit....we got stuck in traffic and I was so uncomfortable in the car, I just didn't know what to do with myself, but blessedly in not too long, I was back home, and feeling better.
I'm off to bed now, the eyelids are getting very heavy. It's hard to believe I'm so worn-out, with everyone waiting on me, and me not lifting a finger. Thank God for family and friends...not sure how I would have gotten through this....
More later.....
I met Keith last Thursday morning at MGH at the Radiology Oncology unit. I got mapped and what-not and had the treatment. The next day we met with Dr. Efstathious--let's just call him Jason, and he described the plan and the additions he had added to the consent form. He and Michaelson had gone over the scan again and decided to expand treatment to include some of the chest where there were nodes also. He was very thorough and detailed in his explanation and also went over the potential side effects. I was so glad Keith was there--a phrase I have continued to say over the past 6 days...it has been a joy for me, of course, and he has been such a help. They mapped the area again, which again took about 45 minutes of agony on the table---you can't move a muscle, and my back was again killing me. But anyway, the second treatment was accomplished and we went home. On Friday, at the third treatment, they again did extra pictures---I keep waiting for the quick visit they keep promising....finally happened on Tuesday. After Friday's visit, Keith and I actually did a little Chrismas shopping, had lunch at Panara and headed home. On Sunday, I had an appointment for Reiki, which was very helpful and relaxing, kind a a redirection of energy, massage, etc. Keith had lunch with his Dad during that, and then Keith and I headed over the Brenda's and watched the Patriots game against Seattle...we left before half-time--I was just tired and out of energy and out of breath. We watched a John Adams chronicle that I had taped--it was great. On Monday, treatment (each day at 10:40am, no treatment on the weekends), I had an appointment with the chiropractor, who worked a bit on my sciatic problem. It really seemed to help. MGH has me on oxycontin for the pain in the abdomen/sciatic nerve/back. It has been extremely helpful, as I have been unable to get at all comfortable in bed, enough to get any sleep, so I've been a walking zombie--more than usual...Keith and I met with Kara, the RNP on Monday--she came over from Yawkey to see us. She observed that the node in my neck was bigger, and that I was struggling even more with catching my breath. She added a steroid to the mix, hoping that it would help with the inflammation in my neck. Keith had emailed her on Sunday afternoon regarding my issues, and she emailed him back around midnight, telling him what she was putting in place. By Monday evening, I had arrangements for a visiting nurse (she came today), and oxygen had arrived and I was plugged in by Monday night. She also had the talk with me about life support and DNR issues. This woman is great. Kristeen and Maia arrived on Monday night also. Maia is staying at Kristin and Chris's in RI and gets to have an overnight with her sweet cousin, Addison tonight. They are great little friends and are having a blast together. Today got off to a harrowing start with constipation issues caused by the oxy, and other things. Heather and Keith both went in with me--finally for a short visit....we got stuck in traffic and I was so uncomfortable in the car, I just didn't know what to do with myself, but blessedly in not too long, I was back home, and feeling better.
I'm off to bed now, the eyelids are getting very heavy. It's hard to believe I'm so worn-out, with everyone waiting on me, and me not lifting a finger. Thank God for family and friends...not sure how I would have gotten through this....
More later.....
Thursday, December 4, 2008
An Update....
Well, it's been a long couple of weeks....I have not felt well, not even well enough to update this blog. I'm weary, short of breath, coughing, have had acid reflux to a ridiculous degree, my back is aching, and I have a swollen gland in my neck, that I've had for 2 weeks.....all right, enough complaints, but that's what's been happening.
I wrote to my oncologist and his RNP this past Monday, suggesting that maybe we should give me a "break" from the treatment, as I was feeling crappy and had these issues going. When I got there on Tuesday, with Brenda, they took one look at the gland and said--no chemo today. It was quite large at this point, so they conferred, and sent me for a CT scan of the chest and neck. They had me wait for the radiologist to read it and then sent me home. Kara, the RNP called at 8:30 the next morning and said that the lymph node was surrounded by necrotic (dead) tissue--the fact that it was dead was a good thing....but that there were cancer cells there also. She said that it had to be treated immediately by radiation, and had an appointment for me that afternoon with the radiology oncologist, as well as an appointment for another CT scan of the stomach. The CT scan folks balked at the idea of doing another scan in less than 24 hours from the last one, because of me having only one kidney, and the dye is processed through the kidney. Anyway, after much consultation, they finally did it without the dye, read it, and decided that they could see what they needed to see.
It was a long day--I was glad to have Brenda there with me on both days. We didn't get home until close to 7pm. The radiologist outlined the plan, consents were signed, and the appointment was made for the next day--today--for mapping the treatment and doing the first treatment. Keith called last night and said he wanted to come down---I discouraged him from doing so, because...well, I just didn't want him to go to all that trouble, which of course, is not trouble to him, it's kindness and love. So, we met at MGH this morning and we went to the appointment for the mapping. It took about 45 minutes or so, and at the end they "tatooed" 5 places on my neck and chest. The doctor explained that he and Dr. Michaelson had discussed and reviewed my scans the night before and decided that the treatment should include the chest area, where it showed new nodes that were potentially pressing on the esosphagus and other tissue, causing the shortness of breath and the cough.
We had a 2 hour wait after that, before the actual treatment, so we went over to see Kara and Dr. Michaelson. They went over the newest scans with us...they are completely baffled that only 5 weeks ago my scan showed that the nodes were shrinking, and now, they are growing. He said that I had been on the most aggressive treatment available, that I shouldn't think that I hadn't done enough. He has taken me off the study completely, as the drugs are not working. They both expressed that they are nervous about this latest turn of events, that this cancer is very aggressive...not a word that we wanted to hear. I was SO glad to have Keith there with me, to be with me, to ask questions, to assimilate the information. We headed back to MGH, from Yawkey, for the radiation, which was painless and fine. There may be some side effects, but not right now...I'll go with that.
So....that's the news from here. Not good news. I was telling my sister, Carole, earlier--the most difficult part of this whole thing was getting the original diagnosis. I have lived with it for awhile, it has settled in, I have been living my life knowing it, and have accepted it as part of my life....this takes it to another level for sure---I will no longer be in denial. But I am not giving up..I will continue to live and fight the battle as best I can. I do know that my optomism got me through those first dark days, and I will call on it again to help give me strength to fight the good fight. Thanks to all---for the prayers, good thoughts, karma--whatever works, I'll take it....
I wrote to my oncologist and his RNP this past Monday, suggesting that maybe we should give me a "break" from the treatment, as I was feeling crappy and had these issues going. When I got there on Tuesday, with Brenda, they took one look at the gland and said--no chemo today. It was quite large at this point, so they conferred, and sent me for a CT scan of the chest and neck. They had me wait for the radiologist to read it and then sent me home. Kara, the RNP called at 8:30 the next morning and said that the lymph node was surrounded by necrotic (dead) tissue--the fact that it was dead was a good thing....but that there were cancer cells there also. She said that it had to be treated immediately by radiation, and had an appointment for me that afternoon with the radiology oncologist, as well as an appointment for another CT scan of the stomach. The CT scan folks balked at the idea of doing another scan in less than 24 hours from the last one, because of me having only one kidney, and the dye is processed through the kidney. Anyway, after much consultation, they finally did it without the dye, read it, and decided that they could see what they needed to see.
It was a long day--I was glad to have Brenda there with me on both days. We didn't get home until close to 7pm. The radiologist outlined the plan, consents were signed, and the appointment was made for the next day--today--for mapping the treatment and doing the first treatment. Keith called last night and said he wanted to come down---I discouraged him from doing so, because...well, I just didn't want him to go to all that trouble, which of course, is not trouble to him, it's kindness and love. So, we met at MGH this morning and we went to the appointment for the mapping. It took about 45 minutes or so, and at the end they "tatooed" 5 places on my neck and chest. The doctor explained that he and Dr. Michaelson had discussed and reviewed my scans the night before and decided that the treatment should include the chest area, where it showed new nodes that were potentially pressing on the esosphagus and other tissue, causing the shortness of breath and the cough.
We had a 2 hour wait after that, before the actual treatment, so we went over to see Kara and Dr. Michaelson. They went over the newest scans with us...they are completely baffled that only 5 weeks ago my scan showed that the nodes were shrinking, and now, they are growing. He said that I had been on the most aggressive treatment available, that I shouldn't think that I hadn't done enough. He has taken me off the study completely, as the drugs are not working. They both expressed that they are nervous about this latest turn of events, that this cancer is very aggressive...not a word that we wanted to hear. I was SO glad to have Keith there with me, to be with me, to ask questions, to assimilate the information. We headed back to MGH, from Yawkey, for the radiation, which was painless and fine. There may be some side effects, but not right now...I'll go with that.
So....that's the news from here. Not good news. I was telling my sister, Carole, earlier--the most difficult part of this whole thing was getting the original diagnosis. I have lived with it for awhile, it has settled in, I have been living my life knowing it, and have accepted it as part of my life....this takes it to another level for sure---I will no longer be in denial. But I am not giving up..I will continue to live and fight the battle as best I can. I do know that my optomism got me through those first dark days, and I will call on it again to help give me strength to fight the good fight. Thanks to all---for the prayers, good thoughts, karma--whatever works, I'll take it....
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