Well, here I am, still in Santa Monica Hospital. Things are...well...interesting!
If you will recall, I was originally admitted a week ago Monday for dehydration due to my near constant nausea and inability to keep food down (if I could even swallow it in the first place). I had become so weak that I was virtually unable to get out of bed and so disinterested in food that it seemed I might never eat again. I didn't realize how sick I was until I started rehydrating and getting a little food In.
As you have already heard, when I arrived we discovered a 6" or so blood clot in my left groin, stretching across my stomach, so we dealt with that first (see previous post). Meanwhile, still trying to get a handle on my nausea, we had been going through multiple anti-nausea drugs to try to find a combination that worked for me, we ran another brain MRI to see if anything new had developed since the last one on 10/3. The results were mixed. Biggest tumors still shrinking, little ones undetectable. However, there was some indication of development of leptomeningeal carcinoma, meaning thie cancer had spread to the Central Nervous System (CNS). This, of course, would not be a positive development.
To determine this, I received a spinal tap early last week. Not a fun procedure but more from a conceptual than a physical standpoint. I don't know about you, but I'd rather do just about anything than have someone puncture my spine. With no sedation.
Apparently, enough of my doctors were convinced that the cancer would show as present, given the images on the MRI, that they unanimously decided to inject a high-dose chemotherapy called methotrexate directly into the lumbar spine. You know, since they were there anyway. I slept 21hours immediately following.
Next morning come to find out that the spinal tap is negative (didn't see that one coming)! Docs still express confidence that it will eventually arrive so none considered this a wasted treatment. Now, after considering all the options, we have a treatment plan I think we can all live with. On Monday, they will be placing another port in my body. This one will be larger and stick out more. It will be attached right in the middle of my giant bald head so if anyone has some bolts for my neck I could have quite the hip Halloween Costume.
This is called an Ommaya Reservoir and will allow them to deliver Herceptin (which is the same drug I am already taking) directly to the CNS. Yes, it means carving some small portion of my skull to place It, but, hey, no more spinal taps. Yippee! And THEY will sedate you!
Before this Ommaya Reservoir, two more lumbar punctures at least were planned to confirm a positive result. I won't be missing those.
So next things next: we have relatively low (I hope)side effect treatment plan for the cancer which seems to be pretty much under control, both above and below the neck. Most reassuring to be sure is that we know we can directly get across the blood brain barrier if we go interthecally. Here's hoping for a good run on try Herceptin. And some quick and lasting help with the nausea !
Friday, October 28, 2011
Tuesday, October 25, 2011
Another update from your guest blogger
Suzanne is still at the hospital so, yet again, I am stepping in to update everyone.
On Monday, Suzanne had a spinal tap to check for leptomeningeal carcinoma. Cancer in the meningeal fluid. We just got the results, which were negative. However, because of the extremely high rate of false negatives with this test, they will need to retest her again in a day or so. This would be an explanation for the nausea. The first step in treatment in a drug called methotrexate being added to the spinal fluid. While they were performing the spinal tap on Monday, they did start the treatment.
Today, she met with the doctor who previously performed the stereotactic radiation on her spine. He took a look at her scans and was very pleased with the results. The brain tumors have shrunk significantly and there is currently no need for any surgery.
As for the blood clot, it is still present. She has started PT and hopefully she will have some relief from that soon.
At this point, we are looking at about another week in the hospital. Please keep her and her family in your prayers.
On another note, life here in the DiSilvestri house is going along as normal as possible (CHAOTIC!!) and I had a funny story to share.
Trooper, the enormous mastiff, likes to greet people coming in the house with some sort of stuffed animal, shoe, or anything else he finds laying around. Yesterday, Natalie was preparing for Halloween and put on a Winnie the Pooh costume. She then fell asleep curled up on the couch. Someone knocked on the door and Trooper, in his excitement, picked Natalie up in his mouth. He promptly dropped her onto the floor where Natalie stayed, asleep, while we all laughed hysterically. Even through all the uncertainty and stress, we are finding some time to laugh.
On Monday, Suzanne had a spinal tap to check for leptomeningeal carcinoma. Cancer in the meningeal fluid. We just got the results, which were negative. However, because of the extremely high rate of false negatives with this test, they will need to retest her again in a day or so. This would be an explanation for the nausea. The first step in treatment in a drug called methotrexate being added to the spinal fluid. While they were performing the spinal tap on Monday, they did start the treatment.
Today, she met with the doctor who previously performed the stereotactic radiation on her spine. He took a look at her scans and was very pleased with the results. The brain tumors have shrunk significantly and there is currently no need for any surgery.
As for the blood clot, it is still present. She has started PT and hopefully she will have some relief from that soon.
At this point, we are looking at about another week in the hospital. Please keep her and her family in your prayers.
On another note, life here in the DiSilvestri house is going along as normal as possible (CHAOTIC!!) and I had a funny story to share.
Trooper, the enormous mastiff, likes to greet people coming in the house with some sort of stuffed animal, shoe, or anything else he finds laying around. Yesterday, Natalie was preparing for Halloween and put on a Winnie the Pooh costume. She then fell asleep curled up on the couch. Someone knocked on the door and Trooper, in his excitement, picked Natalie up in his mouth. He promptly dropped her onto the floor where Natalie stayed, asleep, while we all laughed hysterically. Even through all the uncertainty and stress, we are finding some time to laugh.
Saturday, October 22, 2011
More tests...
Just a quick little post to keep you all up on the latest news.
Suzanne is eating a bit better today, though the nausea is still a major problem. We are still awaiting complete results on all the tests they have already run, and there is one more test planned for Monday.
As soon as we know anything more, I will post it here.
Thanks everyone and PLEASE continue to pray.
Suzanne is eating a bit better today, though the nausea is still a major problem. We are still awaiting complete results on all the tests they have already run, and there is one more test planned for Monday.
As soon as we know anything more, I will post it here.
Thanks everyone and PLEASE continue to pray.
Friday, October 21, 2011
Finally, an update!
Hello Raising Saints readers! My name is Briana and I am guest blogging for Suzanne right now. She is well aware that everyone is anxiously awaiting an update on her health and, as she is currently unable to successfully blog, she has asked me to temporarily step in.
So, the much awaited update: This last Monday, Suzanne was admitted to UCLA hospital in Santa Monica. She went in for a few reasons, mostly dehydration and extreme nausea that was keeping her from eating or drinking much of anything. Also on Monday morning she developed pain in her left leg/groin area. Jay took her to UCLA to see her oncologist and, after infusing her with fluids, it was agreed that Suzanne be admitted to the hospital. They discovered a large blood clot in her femoral vein.
She was finally admitted and transferred to the hospital in Santa Monica because that is where the oncologists who specialize in tumor/mass related cancers are based. She got a wonderful doctor who is very concerned about a number of things. Obviously, the blood clot is a high priority, but the nausea is also very concerning. At this point, they have tried nearly every anti-nausea medication to no avail.
On Tuesday afternoon, Suzanne underwent surgery for the blood clot. First, they placed an "umbrella" type filter to prevent any clots from passing into her lungs. Then, they used an egg-beater type device to go into the femoral vein to break up the clot. The first part of the surgery went extremely well and the filter is in place. The second part of the surgery was only partially successful. They were not able to break up the clot. They are unable to put her on any medications that would break up the clot because they could cause bleeding on her brain. For now, they are keeping her well hydrated and monitoring both the clot and the filter.
As for the nausea, they have ordered a number of tests, none of them showing anything yet. They did a new set of scans and so far no word on any abnormalities. The oncologist asked a gastroenterologist to see her to rule out any kind of physical GI problems. For now, we are just waiting, waiting, waiting. Waiting for tests to be run, waiting for results to come in, and mostly waiting for someone to figure out what is wrong so it can be fixed.
After spending time with her yesterday, I can happily report that she is actually more mentally coherent than she has been for a few weeks. She has some color in her cheeks again and we were able to spend some time talking and laughing. She is trying really hard to force food down because she knows that is going to be the key in her release. Throughout the day she was able to take a few bites of various foods here and there and keep them down.
She is getting excellent care. All the staff there have been so nice and helpful. None of us have any doubts that she is where she needs to be and that she is getting the best care possible.
On behalf of the DiSilvestri clan, I really want to say a great big thank you for all the help and support that has been offered. Our Sacred Heart community has been a beautiful example of true charity and we couldn't be more blessed to have such an incredible parish and school in our lives.
All the love and prayers are felt and greatly appreciated. Also a big thank you to the West Valley Rebels and all their support of our cheerleaders and football players. At this point there are too many people to personally thank, so please know that we are so grateful for all the meals, laundry help, chauffeuring help and general good wishes. Thank you all.
Our goal is to update here on a regular basis with the latest, accurate information on Suzanne.
So, tune in next time for the latest episode in Suzanne's journey.
So, the much awaited update: This last Monday, Suzanne was admitted to UCLA hospital in Santa Monica. She went in for a few reasons, mostly dehydration and extreme nausea that was keeping her from eating or drinking much of anything. Also on Monday morning she developed pain in her left leg/groin area. Jay took her to UCLA to see her oncologist and, after infusing her with fluids, it was agreed that Suzanne be admitted to the hospital. They discovered a large blood clot in her femoral vein.
She was finally admitted and transferred to the hospital in Santa Monica because that is where the oncologists who specialize in tumor/mass related cancers are based. She got a wonderful doctor who is very concerned about a number of things. Obviously, the blood clot is a high priority, but the nausea is also very concerning. At this point, they have tried nearly every anti-nausea medication to no avail.
On Tuesday afternoon, Suzanne underwent surgery for the blood clot. First, they placed an "umbrella" type filter to prevent any clots from passing into her lungs. Then, they used an egg-beater type device to go into the femoral vein to break up the clot. The first part of the surgery went extremely well and the filter is in place. The second part of the surgery was only partially successful. They were not able to break up the clot. They are unable to put her on any medications that would break up the clot because they could cause bleeding on her brain. For now, they are keeping her well hydrated and monitoring both the clot and the filter.
As for the nausea, they have ordered a number of tests, none of them showing anything yet. They did a new set of scans and so far no word on any abnormalities. The oncologist asked a gastroenterologist to see her to rule out any kind of physical GI problems. For now, we are just waiting, waiting, waiting. Waiting for tests to be run, waiting for results to come in, and mostly waiting for someone to figure out what is wrong so it can be fixed.
After spending time with her yesterday, I can happily report that she is actually more mentally coherent than she has been for a few weeks. She has some color in her cheeks again and we were able to spend some time talking and laughing. She is trying really hard to force food down because she knows that is going to be the key in her release. Throughout the day she was able to take a few bites of various foods here and there and keep them down.
She is getting excellent care. All the staff there have been so nice and helpful. None of us have any doubts that she is where she needs to be and that she is getting the best care possible.
On behalf of the DiSilvestri clan, I really want to say a great big thank you for all the help and support that has been offered. Our Sacred Heart community has been a beautiful example of true charity and we couldn't be more blessed to have such an incredible parish and school in our lives.
All the love and prayers are felt and greatly appreciated. Also a big thank you to the West Valley Rebels and all their support of our cheerleaders and football players. At this point there are too many people to personally thank, so please know that we are so grateful for all the meals, laundry help, chauffeuring help and general good wishes. Thank you all.
Our goal is to update here on a regular basis with the latest, accurate information on Suzanne.
So, tune in next time for the latest episode in Suzanne's journey.
Best Sleep I've Had In Years
Yes, sir, right here at UCLA Santa Monica hospital where I have been a distinguished guest since Monday.
So, to all of you with unreturned phone calls thank yous or emails, overdue bills or forms, or anything else offensive, please forgive me because that's a pretty good excuse in my humble opinion. Plus, I was really, really sick for the week or two before I got here, so it has been awhile since I have been able to have anything close to a normal day. Now that the requisite apology (for something over which I am completely unable to control) is over, I can let you know what is going on.
I can't eat. Very little stays down, and getting a bite of anything in at all is at times agonizing. I am nauseous nearly all the time (after 7 pregnancies I KNOW nausea, and this is right up there with the worst I ever experienced with even Joey in the first 28 weeks which was really bad). Obviously, this is a problem which, if we don't get a rather quick handle on, could be very bad.
So, here I am, where so far they have threaded an eggbeater down my neck with wire (or was it inserted through the incision in the back of my knee? I am unsure). It was incredibly disconcerting when they turned on the egg beater and it felt like Magic Fingers on the INSIDE of the leg. Really, really strange. I begged them to take that twilight anesthesia and turn it into a drug-induced coma, but their need to communicate with me during the procedure unfortunately precluded this. Next, we tracked two cups of barium as they traveled down my gastrointestinal tract, taking pictures along the way like tourists riding down the Grand Canyon on donkeys. Then came the chest CT to check on the pneumonia which turned out to be of limited use due to my inability to keep down the contrast. Then came the brain MRI to see if any new or different metastases there are causing it. Certainly we are hoping it is not that.
In the meantime, we have been going through every anti nausea med known to mankind to see if we can find something that can stand it's ground against this beast of a nausea I have going on. Finally, yesterday we found one that worked and I ate nearly normally today. Great news and I don't remember feeling as well as I did today in months since I am fully hydrated, had good nutrition in me, took a shower and even walked a bit.
The doctors will come and talk to us tomorrow about test results, and I know I will be having at least one more not-fun test on Monday. I never expected to be in the hospital this long and the whole thing is a little scary (could not do this without faith and trust in God, as it's hard enough WITH those things!). Please continue to pray for me and my family, especially the kids who I miss so much and I know miss me too.
As always, I am thankful to those who have literally moved into our house so Jay can be with me during the scariest parts and the kids can still get to school and sports and all. You will all be happy, I'm sure, to see Briana is guest blogging so at least there will be information when I cannot post. It was so nice to spend time with Jay tonight as I muddled through some of my fears about death and dying, potentially leaving the kids, etc. We ended up playing Rack-O and had so much fun. That is the stuff life is about at the end of the day.
I am praying for a long life, to see my kids grow up and for a good quality of life, only recently of which I have become aware is critically Important to someone in cancer treatment. Some treatments are more than tolerable while some are simply brutal. The next few weeks will bring many decisions for Jay and me and my doctors as we decide how to treat the cancer going forward. God's will be done and may we make the best, most informed choices we can make!
So, to all of you with unreturned phone calls thank yous or emails, overdue bills or forms, or anything else offensive, please forgive me because that's a pretty good excuse in my humble opinion. Plus, I was really, really sick for the week or two before I got here, so it has been awhile since I have been able to have anything close to a normal day. Now that the requisite apology (for something over which I am completely unable to control) is over, I can let you know what is going on.
I can't eat. Very little stays down, and getting a bite of anything in at all is at times agonizing. I am nauseous nearly all the time (after 7 pregnancies I KNOW nausea, and this is right up there with the worst I ever experienced with even Joey in the first 28 weeks which was really bad). Obviously, this is a problem which, if we don't get a rather quick handle on, could be very bad.
So, here I am, where so far they have threaded an eggbeater down my neck with wire (or was it inserted through the incision in the back of my knee? I am unsure). It was incredibly disconcerting when they turned on the egg beater and it felt like Magic Fingers on the INSIDE of the leg. Really, really strange. I begged them to take that twilight anesthesia and turn it into a drug-induced coma, but their need to communicate with me during the procedure unfortunately precluded this. Next, we tracked two cups of barium as they traveled down my gastrointestinal tract, taking pictures along the way like tourists riding down the Grand Canyon on donkeys. Then came the chest CT to check on the pneumonia which turned out to be of limited use due to my inability to keep down the contrast. Then came the brain MRI to see if any new or different metastases there are causing it. Certainly we are hoping it is not that.
In the meantime, we have been going through every anti nausea med known to mankind to see if we can find something that can stand it's ground against this beast of a nausea I have going on. Finally, yesterday we found one that worked and I ate nearly normally today. Great news and I don't remember feeling as well as I did today in months since I am fully hydrated, had good nutrition in me, took a shower and even walked a bit.
The doctors will come and talk to us tomorrow about test results, and I know I will be having at least one more not-fun test on Monday. I never expected to be in the hospital this long and the whole thing is a little scary (could not do this without faith and trust in God, as it's hard enough WITH those things!). Please continue to pray for me and my family, especially the kids who I miss so much and I know miss me too.
As always, I am thankful to those who have literally moved into our house so Jay can be with me during the scariest parts and the kids can still get to school and sports and all. You will all be happy, I'm sure, to see Briana is guest blogging so at least there will be information when I cannot post. It was so nice to spend time with Jay tonight as I muddled through some of my fears about death and dying, potentially leaving the kids, etc. We ended up playing Rack-O and had so much fun. That is the stuff life is about at the end of the day.
I am praying for a long life, to see my kids grow up and for a good quality of life, only recently of which I have become aware is critically Important to someone in cancer treatment. Some treatments are more than tolerable while some are simply brutal. The next few weeks will bring many decisions for Jay and me and my doctors as we decide how to treat the cancer going forward. God's will be done and may we make the best, most informed choices we can make!
Tuesday, October 11, 2011
Good Scans, Not So Good Health
Sorry, once again, for taking so long to blog the news we have all been waiting for, but I have literally not been out of bed for days. I have been quite ill with pnemonia and unable to eat or drink much (luckily I have been "blessed" by a team of care givers who are making sure that I have consuming enough liquid and calories so that I don't require IV hydration and nutrients, but I must admit I am not making this easy on them, as nausea is my least favorite sensation and that is what anything that enters my body creates right now). But, it is nice to be cared for and I am doing my best to please everyone who loves me but sometimes I want to stomp my foot like a small child and say, "No more!"
At any rate, the brain and body scans came back as well as my doctor had hoped they would. All brain lesions have disappeared or shrunk substantially. The biggest of 11mm is now 6mm. There are no new lesions and everyone expects them to continue to shrink over time. We will check them every three months indefinitely and if they start to grow or change we will take a magic zapping wand to them individually but we are hopeful that they will just die on the sword where they are and that the Tykerb oral meds I am taking will simply keep them at bay.
The cancer outside of the brain also appears to be well controlled from neck to knee, so overall very good news out side of the pneumonia. This has been my first experience with pneumonia and I had no idea how painful it could be. I am trying to make it through one day at at time here, with seven or eight different medications that all make me nauseous but am hopeful that the meds are starting to kick in here, almost a week later. I can take a deeper breath today without screaming in pain and water tastes good for the first time in weeks. And, I'm blogging! Overdue, but doing it nonetheless!
So, once again, my apologies for making you wait for this this mostly wonderful news and bear with me as I make every effort to recover my strength and rejoin the world.
Wednesday, October 05, 2011
An Open Letter to Carnival Cruise Lines
Please accept my heartfelt apologies for taking so long to blog after returning from our cruise more than a week ago. I unfortunately became quite ill after returning home (which I have now learned is not that uncommon for people following cruises, much less those who may be immunosuppressed as I have been from the steroids). I feel as though I have contracted some sort of sleeping sickness where all I do is sleep. Not bad in theory, but nonetheless, I would prefer to be awake for at least a few hours a day to keep a handle on what is going on around me.
I had a mini adventure yesterday to the urgent care as well when I woke up at 2am to discover I could not get a deep breath without alarming pain in my right lung and rib cage. An xray discovered no obvious cracks or splits, but I still cannot take in a deep breath and am unsure where this may have come from. Just one more thing to alarm those who love me with--sorry guys!
I had a mini adventure yesterday to the urgent care as well when I woke up at 2am to discover I could not get a deep breath without alarming pain in my right lung and rib cage. An xray discovered no obvious cracks or splits, but I still cannot take in a deep breath and am unsure where this may have come from. Just one more thing to alarm those who love me with--sorry guys!
At any rate, now that this apology and explanation is behind me, I come to the real reason for this post: a letter to Carnival Cruise Lines.
* * * * *
Dear Carnival Cruise Lines,
We five old biddies (well, OK, four old biddies and Briana who really is still too young to counted as a biddie) had a great time on our cruise to Ensenada. We loved the boat, which was beautiful, we enjoyed the food (for the most part), we loved the little nooks and crannies all over the boat where we would find a quiet place to read. I can't remember ever laughing to hard in my life. My sides ached at the end of each day from laughing and as far as I can recall there is no better medicine than from-the-bottom-of-your-belly laughter like that. Thank you for a great birthday celebration.
I was particularly impressed by how well five adult women fit into the smallest cabin you have. I was convinced that we were going to only barely tolerate the accomodations but they were better than adequate. Nicely done!
Now, on to some other things...
From the minute we booked this cruise, months and months ago, I had been pestering your guest services department about whether or not there would be a priest on board to give mass on Sunday. We were to be at sea on Sunday and I have never, ever missed a Sunday mass since becoming Catholic in 1999. Plus, I was about to cause three fellow Catholics to miss their Sunday mass as well since I did not check out the mass situation before I booked. (I won't make THAT mistake again!). At any rate, it became evident as I checked with guest services one more time at departure that not only was there no priest on board, but there was also no generic religious service at all. Now, I have no idea how many people are on board a ship like this, but I was pretty sad that, given all the debauchery and gambling and half-dressed people running around that there couldn't be at least a small concession to those of us who would really really like to remember God on Sundays, because I know there must be more than just us five.
After praying for months that God would send a priest on board for us, my prayer was answered in a most unusual way. Hurricane Hillary appeared south of us on Saturday forcing cruise ships to juggle their positions and change their itineraries. Suddenly, we found ourselves at sea on Saturday and in port in Ensenada on Sunday. Yippee! We ended up going to mass at the Cathedral of Ensenada on Sunday and had a beautiful mass. I couldn't have planned that if I had tried! After two days on the boat, I was so relieved that I had nothing to do with getting a priest on that boat because the dress allowed was so offensive to me that I couldn't imagine a priest trying to avert his eyes from scantily clad person after scantily clad person. I was thrilled that my husband and children were not on that boat either, as it is not right for anyone to have to act like they aren't noticing that person in front of them in the buffet line who is wearing large patterned lace pants and NOTHING else. I had to move place in line. Carnival, I know you are the "fun ship" but please consider a basic dress code because everywhere I looked I was horrified. Do these young people (and worse, some of the older people) have no self-respect? I was embarrassed for them and had to resist the urge to run after people putting towels on them. Yikes! Our society has become such a "reality TV" culture where everyone is basically shouting "look at me!". Look at my clothes, or lack thereof, look at my tattoos and body piercings, look at how clever and funny I am when I drink too much, look at my put my hands all over this person's body who I just met tonight. Shudder.
On another note entirely, I would like to mention that your wheelchair accessibility was not stellar. The ramp lips were very difficult to navigate and many a time I was nearly dumped right out of my chair as we charged them to get me over the doorway humps. Just a thought.
So, Carnival, overall we had a great time and hope next time we sail with you we will do so under a classier dress code and improved wheelchair access. Also, we loved the comedian--so nice to have a family-friendly option.
Most Sincerely,
Suzanne Di Silvestri
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