Stuck in New York and not doing well
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melissaincali
Member Posts: 34
Well, we are in New York (going on 2 1/2 weeks now). I don't post often, so in case you missed my last post....we are here so that my husband can have a hepatic pump installed. Or so we thought. After numerous pre-surgical scans, they found something in or near the pancreas and did not want to go through with surgery until after they scoped and biopsied it. The doctors thoughts were that it was either a lymph node that was another metastatic node or it was a new type of cancer (pancreatic cancer). So on Friday, he had a few procedures done at once, a stent put in because of biliary duct issues, and an endoscopy and biopsy. The findings were still confusing. The lesion is in the pancreas, but the biopsy was mucinous which is not typical of pancreatic cancer. Either it is a pre-cancerous lesion or it is a colorectal met in the pancreas.
So, we wait for biopsy results. Unfortunately, my husband had a horrible reaction to the the procedure and has been unable to eat much for the past 4 days and just lays around. Apparently the procedure can cause pancreatitis.
I thought he would be done with the surgery to put in the pump and we would be headed home in a week. Now, we haven't even started the process and they want to do a bigger surgery to remove the primary tumor when they implant the pump. More time in the hospital, more recovery time, more time stuck in New York City.
We have already moved 3 times since we have been here and will need to find another place to live since we will be here so long. We are looking at December before we get home. I am not handling the change very well. I am exhausted and trying to take care of my husband and my 3 year old who is acting up probably due to the massive changes...all of this in New York City. I miss my life. I miss my home. No real questions here, just needed to vent.
So, we wait for biopsy results. Unfortunately, my husband had a horrible reaction to the the procedure and has been unable to eat much for the past 4 days and just lays around. Apparently the procedure can cause pancreatitis.
I thought he would be done with the surgery to put in the pump and we would be headed home in a week. Now, we haven't even started the process and they want to do a bigger surgery to remove the primary tumor when they implant the pump. More time in the hospital, more recovery time, more time stuck in New York City.
We have already moved 3 times since we have been here and will need to find another place to live since we will be here so long. We are looking at December before we get home. I am not handling the change very well. I am exhausted and trying to take care of my husband and my 3 year old who is acting up probably due to the massive changes...all of this in New York City. I miss my life. I miss my home. No real questions here, just needed to vent.
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Comments
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{{hugs}}
I am sorry for all you are going through. A good care giver is like an angel here on earth. I hope that you have friends near you for support too. I watched my mom die of colon cancer before I found out about mine and I swear it is worse to watch someone you love die than to have it yourself. Take care, I hope things improve soon.0 -
Sorry for your "bumps along the way"
Hello Melissa,
I am really sorry you have had complications in NYC. I have to applaud you for dealing with all this & a 3 year old too! I too have colon cancer & have also had some issues along the way so far. I keep reminding myself what my GI specialist said when she told me I had colon cancer - she told me there would be "bumps along the road". She was definitely right, & my surgeon said they have to reassess at each stage of the road. He also said "this is a marathon, not a sprint". He told me patience is important" (I told hom patience is not my strong suite!) I think people on this road, or journey share many commonalities but our own journey is unique & there are many ways to get to the same destination (NED, health, etc). We "share the road" with different people along our own journeys. Today I met a 15+year colon cancer survivor & was totally inspired. She volunteers at my cancer center. I had previously talked to her on the phone but met her for the 1st time today. She really believes in yoga, meditation, journalling etc.
It sounds like your husband is in good hands but has hit a "bump in the road". He has a lot of positives - I remember from your previous post he is young, he has you and your son, well educated; these are all "tools" to use in the journey; & I bet he has many more excellent tools too.
Take good care of yourself. One thing that I have learned is to accept help from friends & family. If I were in NYC in December i would definitely want to visit that big tree in Times Square.
My husband & I often say someday we will look back at this & say (rembember when....).
Best of luck; I am thinking og you.0 -
More thoughts
I have been thinking about you and your family a lot since I saw your post. I don't like to offer unsolicited advice, but here are some of my thoughts.
I would try to find a place for my son & I to feel as comfortable as possible in a new city. I don't know if you are staying with friends or in hotels etc. July 2008 my family (husband & 2 daughters) stayed in a wonderful inn (The Inn on 23rd in Chelsea) during my first fantastic trip to NYC (I had always wanted to go). It was not cheap but it was our vacation, it was high season & there were 4 of us. For two of you (don't need as much room) & it is not summer something reasonable might be able to be negotiated. It was extremely comfortable & homey. They have a lovely breakfast area that you could enjoy all during the day & there was an honour bar. Some days I found it hard to leave to see the NYC sites as I enjoyed the inn so much. There may be other opportunities for a "homey" place for you & your son while you wait for your husband to recuperate. I have been fortunate so far in that my treatment is local, but we drive through a beautiful part of the city (Toronto) & sometimes, when I am up to it we stop at an antique or garden store, etc. to make something nicer out of the experience. Your husband may be able to enjoy some short breaks during his hospital where he can enjoy even small parts of NYC. I was surprised during one of my hospital stays that they aloowed me "day pases".
Three year olds are resilient & can also provide a diversion from your main focus right now, which is a good thing.
We are Canadians & The Canadian Cancer Society has a Peer Support program where cancer patients/survivors or caregivers fill out a form & can be supported by someone who has had a similar experience. They did a good match for my husband & he talks with his peer every few weeks. He finds it extremely helpful. I looked on the ACS website but couldn't see a similar program; maybe I missed it or perhaps there is somewhere else where you can access a similar program in the USA.
I wish you all the best. The trouble with "plans" is sometimes they change & the changes can break our hearts at the time but still take us to the same place (Recovery!!!!)
Good luck & best wishes to all of you.0 -
Melissa
Melissa,
I have been thinking about your family. So sorry things have gotten harder for the time. As you know you are in the best hands. Your husband's docs are looking for everything and coming up with the best plan of action for your husband.
I can imagine how hard it is being in NYC with your little one. I know for him as well as you any bit of routine will be settling. I teach kindergarten and I know for the little ones if they know what is coming next it helps them out. Did your mom come with you?
I traveled with my daughter to Cleveland Clinic when she was 7 and again when she was 8. She had to have some procedures and it was just the 2 of us in a strange city. I made sure we were in a place I felt very comfortable, I treated the two of us to good food, I got out and walked every day, even if it was just around the hospital with her in a stroller and I connected with some other parents who had kids in the hospital. All of this helped.
I'm sending positive thoughts and prayers your way.
Aloha,
Kathleen0 -
stuck in NYC
Melissa,
Boston has a place that they offer free to cancer patients going through treatment.
It is near where I live. Below is the post from about a week or so ago, I think BooBoo1964 posted it.
I am new to having cancer, just recently diagnosed and my surgery is upcoming. I cannot
imagine being in a different city than my home and going through what you and your husband are going through. I will keep you and your family in my prayers.
Blessings,
Amy
----------------------------------------------
One year ago this week I began my "bad year"..I live on cape cod and was able to stay at the newly opened Astra Zeneca Hope Lodge in Jamaica Plain ,Boston... I lived there for 5 weeks (chemo/radiation) treatments.. This was and is the most wonderful place.. They will be celebrating their 1st birthday Sat.Nov.7th with an open house reception.. They will be accepting gifts for the residents... ANYTHING ie; (a book of stamps, a gift card to c.v.s. ,stop and shop,local eateries, a dozen muffins,coffee, and of course money for supplies. I will be attending as I have just finished all the "B.S." this cancer has caused. Go to a.c.s. hope lodge boston It is a true MIRACLE for so many people and their families !
‹ November Birthday 2010 Colondar - A Must See! ›0 -
Melissa
My prayers go out to you and your family. Does the center where your husband is being treated have any facility or services for families? I know at Stanford they have many services available to families. Maybe they even have a day care center that can give you a much needed break. I am sorry you are going through all of this and away from your home. I do know that very few places are doing the HAI pump. My sister also had something very similar to your husband. She was going in for liver resection when during pre-op they discovered activity near her pancreas. Turns out it was lymph node involvement and the resection was cancelled. Where do you live since you had to travel to NYC for treatment?
Marie0 -
Thanks for the kind thoughts!robinvan said:Hang in There!
Sorry to hear you are stuck. It is tough to be doing all this "on the road". Sounds like they are being very thorough, which is a good thing. Do keep us posted.
Rob; in Vancouver
Thanks for all the kind words and encouragement. I admit that I feel slightly like a wuss because we are in a better position than most for being away from home. We are now staying (for free) in a beautiful 3 bdrm penthouse apt near central park. A friend of a friend of a friend..is out of town on business and offered his place to us. We met him for the first time over the weekend and moved in a few days later. The only good thing about cancer is the unimaginable kindness that we have been shown from friends and strangers. It is shocking to me that someone would offer an apt for free to someone they don't even know.
I was able to get my son into a little co-op preschool 3 mornings a week which should help immensely. Today we got a babysitter and my husband and I went to a museum. It was nice to get out.
We sent family home to return when surgery is rescheduled so that they wouldn't burn through all their time they can take off from work. I guess I find a few things incredibly difficult. First, I have to let people help with my son and just hope that he is resilient. I don't want him to be "damaged" in this process...moving him around every week to a different bed (or couch) and introducing him to new people who will take care of him while we head out to another appt or procedure. I want him to feel safe and secure and that is hard to do in this situation.
Secondly, I worry so much for my husband. He has gone downhill dramatically since we got here. Before this trip you would barely know he had cancer. He had lost some weight and during chemo week he wasn't great, but he always bounced back. He now has horrible pain from a fissure that is near the tumor, has had a difficult time with the chemo here (they infused over 30 minutes instead of 90 minutes...which sent him immediately into horrible cramping), and then he had such an awful reaction to the ERCP that they did last Friday. He hasn't bounced back yet at all. It is not the first time that I have been terrified that I will lose him, but it is the first time that I think I caught a glimpse of what that process might be like. It is incredibly hard to watch him in so much pain.
We used to have tons of good times mixed in with the bad and right now it seems that the pain makes the good times fewer and farther in between. If I knew that they would come back and this was just a bump in the road, I think I would be doing better. I guess I just have to believe and pray that things will turn around soon.
Melissa0 -
Thanks for the kind thoughts!robinvan said:Hang in There!
Sorry to hear you are stuck. It is tough to be doing all this "on the road". Sounds like they are being very thorough, which is a good thing. Do keep us posted.
Rob; in Vancouver
Thanks for all the kind words and encouragement. I admit that I feel slightly like a wuss because we are in a better position than most for being away from home. We are now staying (for free) in a beautiful 3 bdrm penthouse apt near central park. A friend of a friend of a friend..is out of town on business and offered his place to us. We met him for the first time over the weekend and moved in a few days later. The only good thing about cancer is the unimaginable kindness that we have been shown from friends and strangers. It is shocking to me that someone would offer an apt for free to someone they don't even know.
I was able to get my son into a little co-op preschool 3 mornings a week which should help immensely. Today we got a babysitter and my husband and I went to a museum. It was nice to get out.
We sent family home to return when surgery is rescheduled so that they wouldn't burn through all their time they can take off from work. I guess I find a few things incredibly difficult. First, I have to let people help with my son and just hope that he is resilient. I don't want him to be "damaged" in this process...moving him around every week to a different bed (or couch) and introducing him to new people who will take care of him while we head out to another appt or procedure. I want him to feel safe and secure and that is hard to do in this situation.
Secondly, I worry so much for my husband. He has gone downhill dramatically since we got here. Before this trip you would barely know he had cancer. He had lost some weight and during chemo week he wasn't great, but he always bounced back. He now has horrible pain from a fissure that is near the tumor, has had a difficult time with the chemo here (they infused over 30 minutes instead of 90 minutes...which sent him immediately into horrible cramping), and then he had such an awful reaction to the ERCP that they did last Friday. He hasn't bounced back yet at all. It is not the first time that I have been terrified that I will lose him, but it is the first time that I think I caught a glimpse of what that process might be like. It is incredibly hard to watch him in so much pain.
We used to have tons of good times mixed in with the bad and right now it seems that the pain makes the good times fewer and farther in between. If I knew that they would come back and this was just a bump in the road, I think I would be doing better. I guess I just have to believe and pray that things will turn around soon.
Melissa0 -
I totally believe in themelissaincali said:Thanks for the kind thoughts!
Thanks for all the kind words and encouragement. I admit that I feel slightly like a wuss because we are in a better position than most for being away from home. We are now staying (for free) in a beautiful 3 bdrm penthouse apt near central park. A friend of a friend of a friend..is out of town on business and offered his place to us. We met him for the first time over the weekend and moved in a few days later. The only good thing about cancer is the unimaginable kindness that we have been shown from friends and strangers. It is shocking to me that someone would offer an apt for free to someone they don't even know.
I was able to get my son into a little co-op preschool 3 mornings a week which should help immensely. Today we got a babysitter and my husband and I went to a museum. It was nice to get out.
We sent family home to return when surgery is rescheduled so that they wouldn't burn through all their time they can take off from work. I guess I find a few things incredibly difficult. First, I have to let people help with my son and just hope that he is resilient. I don't want him to be "damaged" in this process...moving him around every week to a different bed (or couch) and introducing him to new people who will take care of him while we head out to another appt or procedure. I want him to feel safe and secure and that is hard to do in this situation.
Secondly, I worry so much for my husband. He has gone downhill dramatically since we got here. Before this trip you would barely know he had cancer. He had lost some weight and during chemo week he wasn't great, but he always bounced back. He now has horrible pain from a fissure that is near the tumor, has had a difficult time with the chemo here (they infused over 30 minutes instead of 90 minutes...which sent him immediately into horrible cramping), and then he had such an awful reaction to the ERCP that they did last Friday. He hasn't bounced back yet at all. It is not the first time that I have been terrified that I will lose him, but it is the first time that I think I caught a glimpse of what that process might be like. It is incredibly hard to watch him in so much pain.
We used to have tons of good times mixed in with the bad and right now it seems that the pain makes the good times fewer and farther in between. If I knew that they would come back and this was just a bump in the road, I think I would be doing better. I guess I just have to believe and pray that things will turn around soon.
Melissa
I totally believe in the resilience of kids- and all though your little guy is showing the signs of stress (not sleeping through the night, fighting, crying- those lovely things
and even though he can't really grab onto how sick his Dad is and probably is confused and scared with all the changes going on...he has surrounding him two people who love him and only want what is best for him. You need him just as much as he needs you right now. I would say to set into a routine, bring some normal day to day parts in his life. The daycare thing sounds GREAT- getting a babysitter sounds FABULOUS- anything and everything that supports him being a 3 year old. And don't think you are hurting him by others caring for him- I think the working moms of the world would disagree! :) He may fight it and you may hear him scream for you as you are walking out the door- but you know, that does end eventually- and what he has then is precious time to play, run, be with other kids and just be a kid. So I vote that you are doing all the right and positive things for your little guy.
I think what is alarming for me in reading about your husband has been the rapid decline as well as the very aggressive cancer he has. That in itself has got to be a maddening place to be. I know you are at Sloan- and totally believe he is getting the best care available. I am wishing for him and for your family a hasty, correct plan that puts him on the other side of this, facing toward CA!
In the meantime- you will be in NYC for the PARADE and all that incredible, fun, holiday happenings. Remember Melissa, every single day is a gift.0
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