Overall, today was a good day. My phone rang at 5:00 am...and it was Mom, calling to say "Hi, Tessie." I don't care that she woke me up - I was just so excited that she was calling. We were not on for long, but it brought a smile to my face.
I promised yesterday that I would explain why my mom calls me "Tess" or "Tessie." According to my mother, when I was a small child, I pronounced my name as "Tessiekeys." She was convinced that I would get lost somewhere, and that the police officers would never manage to get me home again because they would be searching for a Mr. and Mrs. Keys who had lost their daughter Tessie. My mom used to always call me Tessiekeys to tease me, and then she would shorten that to Tessie or Tess. She still calls me that to this day.
Micah and Maya slept until about 8:30 am today, and then we were off and running. Much to my surprise, our babysitter showed up at 9:00 am sharp! We hadn't discussed whether she would take off for Labor Day...to be honest, I assumed she wouldn't be showing up. But, I was thrilled to see her when she did arrive. My dad called a little after 9 to give me the daily update about my mom (she slept well and they were just headed in to wake her up). My mom called me again around 10:00 to tell me that there were a ton of helicopters landing at the hospital, and she thought if I stood in between the buildings with Micah, he would get to see the helicopters and he would love it. I smiled...my mom has always had a thing for airplanes and helicopters. She used to love to sit and watch the planes take off and land from the airport, and there is a spot on the GW Parkway that she always enjoys because you can see the planes taking off and landing.
Around 10:30, Elliot and I gathered our things and headed up to Hopkins with Maya to visit my mom. When we arrived, Trenna was already there, and my mom's other college roommate, Reggie, and her husband Charles, were also visiting. My mom was just returning from a therapy session, and definitely feeling a bit tired. My Dad and Mona arrived a little later, followed by Jeremy and the girls...and the parade of visitors began. The girls did so much to lift mom's spirits...and they couldn't get enough time with Grampy, either! The girls were still sporting their sparkle tattoos they had gotten at the baby naming yesterday (Micah, too, still had a sparkly blue and green turtle tattoo on his arm).
Mona, Reggie and Mom had an opportunity to sit and reminisce about their college days. It was fun for me to hear them chatting and sharing stories. Next, my mom's co-worker, Chi, and her son came up to see us. It was so wonderful for them to make the trip up, and my mom was thrilled to see Chi. She brought my mom this wonderful green tea sponge cake that she loves (and Chi, we gave her a piece after dinner tonight). Shortly thereafter, Trenna said her goodbyes and left to drive back to Syracuse.
The visitors continued throughout the day. Our friends Elaine and Robin were the next to arrive, and were there for several hours. I think this visit was particularly challenging for them...they lost their son-in-law to Lymphoma nearly 2 years ago. Jeremy had to take the girls back home, but they had a wonderful visit with all of us. Diane and Marisa also stopped by for a little while (and dropped off some brownies and cookies). Elliot had to leave to get home in time for the babysitter to get to her second job, so I decided to drive home later with my Dad and Mona. Mom had to head to another therapy session, and she was getting exhausted. She did really well in physical therapy today - they worked on standing and sitting up straight, and helping her turn her head to utilize the vision she has. Today she was doing a better job of turning her head and lifting her left arm. By the end of therapy, however, she was completely exhausted. Luckily, she had a bit of time to nap.
After therapy, the doctor came to speak to us. We learned that all the blood thinners my mom has been on made her blood too thin, and put her at a huge risk for a massive bleed. They said that they like to see the clotting factor around a 2-3, and my mom's was almost at a 5. They asked for permission to give my mother a platelet transfusion to try to bring the clotting factor back down again. They will continue to monitor her levels, and if the first transfusion does not get her in range, they will do a second transfusion. If they overshoot and her clotting factor drops below 2, they will restart some of the blood thinners again. What a mess! I was worried about her blood clot, but they said that keeping her clotting factor between 2-3 would be the ideal level for dealing with her blood clot. Luckily, she has a PICC line in, and the transfusion went off without any issues.
My dad's cousin Marlene and Hank were the next to arrive. My mom chatted with them and she talked about looking forward to seeing their new house at Thanksgiving (if it is done in time). I sure hope that happens. We rounded up the day with a visit from Sheila and Les on their way back into town from a wedding in New York. Sheila had crocheted a beautiful hat for my mom - the hat she is sporting in this blog. My mom was thrilled to have the hat, and she said it is keeping her nice and warm.
At the end of the day, my mom started asking some questions about how we were going to manage her at home. She was quite astute when she looked at me and said "I think maybe I'm far more debilitated than I realize." I looked back at her and said, "Yes, mom, unfortunately that is true." We talked a little about her coming home, and I said we were doing everything we can to get her there. We talked about the fact that if she comes back to their house, she wouldn't be able to manage the stairs, or get to a bathroom. I asked her whether it was more important for her to get back to the house, or to just be in a home with us. She said that she didn't really care about the house itself, she just wanted to be with us and not alone in a hospital. Although, in the next sentence she said that maybe she should be moved into a home like we did for my grandmother. Frankly, I think until she fully understands her physical condition and her prognosis, she probably cannot give a full opinion about what she wants. I think that her first choice would be to go home and live as she did before all of this happened...but that isn't going to be an option.
Over the next week or two, we will need to start making some decisions about our future living arrangements. I know it is my hope to have her home with us, so that she can have her family around her when the time comes. But most of all, I want her to have the best possible quality of life for the time she has left...I don't want to confine her to a hospital bed in the middle of a living room and strip her of her last vestiges of dignity if she is stronger than that.
To be honest, a lot will depend on how much time my mother is likely to have...we may only have weeks, but we could have a few months. Unfortunately, no one knows what will happen. It was only 10 days ago that we thought she was dying...and now the doctors think she is relatively stable, and could be for a while longer. That may also depend on how she tolerates radiation and chemotherapy. According to the doctors, brain radiation is fairly well tolerated...it doesn't hurt and it isn't as taxing on the body as other types of radiation. Additionally, chemotherapy is strictly oral, and again, supposedly well tolerated.
If my mom handles the radiation and chemo, it could buy her a bit more good time before the tumor grows into the basal ganglia. Shrinking the tumor and slowing its growth could relieve some of her symptoms, too. In that case, if she is a bit stronger and has some time, we may need to bring her to a house where she can have a room with a door, where she can rest when she is tired and move away from the noise of the house, and where there are also living areas for visitors to come and spend time with her. A house would allow her some privacy when she is dressing and using the toilet, or in need of an escape from the tumult. We would still need to hire some home health aides to help care for her.
If, however, my mom does not tolerate the radiation and chemo well, it will force us to discontinue treatment. In that case, my mom will not have much time left at all. If she is largely bedridden and unable to be seated in a chair or move around (or less interested in receiving visitors), then it may make sense to just bring her home to my parents' house and set up a hospital bed in the living room.
At some point, we are going to have to talk to my mom more specifically about her prognosis. I'm not really sure when that will happen...all I know is that she needs to have hope right now. I suspect the doctor and/or the social worker will be doing that after we see how things go with radiation and chemo. She asked us early on to make sure that she participates in the decisions we make, and she wants us to make decisions together, as one voice, prioritizing quality of life first and foremost. That is how we decided to go ahead with the surgery. My mom wants to do whatever she can to get the most quality time she can get...but only if she can have quality time. Any treatments that are not bringing her more quality time...well, we won't do them. It remains to be seen how radiation and chemo will fit into that goal.
We said goodnight to my mom around 6:00. Mona said her goodbyes because she is headed back to Texas in the morning. It has been wonderful for my mom to have her here all this time - she said it gave her spirits a real boost. I also appreciated having her around on Friday when my mom was so sick.
On a lighter note, Elliot and I are starting to prepare for our Rosh Hashana dinner at the hospital. As I type this, we have two different versions of my mom's brisket recipe cooking on the stove, and Elliot is also cooking his grandmother's turkey recipe. The two of us cooked these together tonight. We plan to bring all the food to the hospital and have a little family celebration. Hopefully, my mom can tell us if we got her recipe right!
And for those of you who have asked, my mother's Hebrew name is Dvorah Chana bat Bruchah Leah.
Monday, September 6, 2010
Sunday, September 5, 2010
You Are My Sunshine
I have learned that life is short...and life as you know it can be upended in an instant. My world turned upside down on Memorial Day this year...and I didn't even realize it at the time. From the time my mom left the hospital I had a nagging feeling that I was losing her. In fact, for months, I felt like I had lost my mom and she was right there in front of me. Over the weeks, I watched my mom suffer because she did not feel well...and no one seemed to be able to tell her why. For a week or two in late July/early August, it started to feel like she was coming back to us...until her balance issues started. Over the course of ten days before she was hospitalized at Suburban on August 21, I watched my mom deteriorate. But, it was that simple 24 hour period beginning around 5:00 pm on August 21 when I finally realized how my world would forever be altered.
Today was a difficult day for me. On the one hand, it was filled with so much happiness as we were able to share in the naming celebration of our good friends, Matt and Marisa, as they gave their daughter her Hebrew name. I found myself crying at so many points during that ceremony - sad that my mother was not able to be there (in fact, she was angry that we did not bring her outfit so she could join us, and even angrier when she realized we went without her) and sad that Maya's naming ceremony a month before all of this tragedy struck will likely be the last time my children celebrate a family event with all four of their grandparents together. We were so touched today when Matt and Marisa mentioned mom during the ceremony, and so thankful to all of the people who came up to us to tell us that their thoughts and prayers are with us. It was a beautiful event, and we were lucky to participate.
While we were at the naming ceremony, Mona and Trenna visited with my mom at the hospital, and my mom's co-worker, Jo, also stopped in to visit. I am happy to report she was headache (and nausea) free today! (Dr. Olivi even called us early this morning to let us know he had checked in on her and she was doing much better). The rehab unit had a "BBQ" on the floor...burgers, dogs, cole slaw, potato salad and cookies. They had a good time there. My mother spent most of the day in therapy...speech therapy, physical therapy, occupational therapy and recreational therapy.
After the naming, my brother, father, Suzette, Joel, Elliot, Micah, Maya and I all headed over to the hospital. We were joined there by Suellen and Greg and Gail and Steven. My mom was so busy with therapy that we had very little time to visit with her, although she was overjoyed when she got a few minutes with Micah and Maya on her way to therapy. I went with my mom to her recreational therapy where they had her playing circle solitaire. It was so hard to see my mom frustrated and tired by such a seemingly simple task...playing a game that she once taught me how to play more than 20 years ago. She found it challenging to turn her head and use the vision she has to find the different piles. She had difficulty figuring out how to count from 7 to 10, and she couldn't remember the way the numbers on a clock worked. No matter what happens, this tragic disease has stolen so much already from my mother...things she can never get back.
After her therapy sessions today, my mom was exhausted. At one point, she turned to me and said "this is just so hard for me to do, Tess. I'm so tired, and I just want to go home." (I'll explain another day why my mom calls me Tess). It brought tears to my eyes, and I put my arm around her and said "I know mom, but it takes hard work to get stronger, and you can do this." Before I left this evening, she asked me to gather her things together. When I asked her why I needed to pack them all up, she asked "Aren't I going home tonight?" When I told her that no, she wasn't, and she was supposed to be in rehab for 2-3 weeks, she looked devastated.
On a positive note, tonight around 9:00, I was sitting here, starting to write this blog, when the phone rang. I looked at the caller id and saw that it was my mom's cell phone! My heart skipped a beat as I eagerly answered it. I waited a few minutes before my mom actually managed to get the phone to her ear and speak. She greeted me with her typical "Hiya" and said she just wanted to call me to say goodnight. She said that they had just given her meds, and she was going to bed. It was 100% my mom...as if there was nothing wrong at all. We chatted a few minutes and then I said goodnight and told her I would see her in the morning.
If you'd like to end on a high note, perhaps you should stop reading the rest of this blog post. Tonight, the sad is taking over, and I intend to share that here. Everyday, I sit here and read so many words of encouragement...and I appreciate each and every one of them. But, at the same time, I cringe every time someone tells us how my mom will "beat the odds" or shares a story about how someone they know with a different type of stage IV cancer went into remission. I know those words are meant as messages of hope, and I know that everyone just wants us to have faith and keep strong. But unlike so many other cancers, GBMs are fatal - they are not curable. Some people, who catch it early enough, or have them in locations that are fairly easy to remove surgically can have some really good time and years left - they live with cancer, but they are not "cured." I know everyone is well-meaning and wants to give us hope for a happy ending...but it just hurts when I hear those comments, and I'm angry at the unfairness that my mom doesn't even have a fighting chance to beat this disease. Because my mom IS a fighter, and I do believe that if there were odds of survival and cure, she could do it. My mom always used to tell us that "no one ever said life is fair." Well, she is right, because this definitely isn't fair. All we can hope for is a little more time, and I do hope for that with every fiber of my being.
Even if my mom becomes one of the "lucky" ones and manages to live another year or two (or even more), she has already been robbed of so much of herself. Her independence is gone...that went with her loss of vision, her loss of balance, and the loss of use of her left side of her body. Those are things she will never recover. She won't be able to babysit her grandchildren, or crochet an afghan, or drive herself to dinner with her friends, or take off for a girls' weekend, or any number of other things she loved to do. This disease has already destroyed so much of her brain that she will never be as she was even just a few short weeks ago. Luckily, this disease has spared her memories and her personality...she is now my mom, trapped inside a failing body.
And I am angry at the doctors who say finding it earlier wouldn't have changed the outcome. To parody a Bill Clinton phrase, it all depends on what your definition of "outcome" is. As I've said before, I understand that if your definition of outcome is life v. death, then yes, finding this cancer back in May wouldn't have changed the outcome. This GBM was fatal the minute it appeared in my mother's head, and I understand that. BUT, if "outcome" is defined by quality of life and longevity, then I absolutely believe that finding this tumor back in May would have made a difference. She could have gone through surgery, chemo and radiation before she lost her vision, her balance, her strength and her ability to walk. She might not have needed to go to rehab at all, and she could have lived comfortably in her own home during this time, walking the stairs, doing the things she most enjoyed doing. I firmly believe that we could have gotten more of the tumor, possibly buying her a bit more time. If nothing else, my mom could have had more strength to fight and LIVE in the now. I also believe she would not have endured the past few months of misery, and I think that the time she had left would have been better quality time. So, hearing that the "outcome" wouldn't be any different does not provide me any sense of comfort at all, because I am 100% certain we could have given her a bit more quality. And any doctor who says otherwise...well, just is choosing a different definition of the word "outcome."
Each day, simple things in life make me realize what I will be losing when I lose my mother. And yes, I said when. I hear one of my mom's friends pass on news of someone we know, and I realize that I will be cut off from the "grapevine." I talk about planning a trip, and I realize that I'm not sure what I will do with my children when I go out of town. My mom is one of my best friends, and I rely on her for so many little things. She is my sounding board and my outlet. In times like these, she is normally the first person I would turn to for help...and I can't because she is the one who is sick. I think of a million and nine inside jokes and little phrases that my mom and I say to each other, and I realize that there is no one else in the world who will understand what is funny about them. I miss having my mom call me everyday to say she is "touching base" to which I always respond "what base are you touching?" and my mom promptly laughs as we say "third base." There is a story there...and probably no one else would appreciate the humor in it. I think about how she tells me she is going to get her hair colored, and I ask her what color, and she responds with "blue" while we both dissolve in laughter. I wonder who else knows enough about me to share my "small world" experiences. I start singing the song "You Are My Sunshine" to my children, and the words my mother used to sing to me when I was a small child smack me between the eyes..."You are my sunshine, my only sunshine, you make me happy when skies are grey. You'll never know, dear, how much I love you. Please don't take my sunshine away. The other night, dear, as I lay sleeping, I dreamt I held you in my arms. But when I woke, dear, I was mistaken, and I hung my head and cried." I already miss my sunshine.
Today was a difficult day for me. On the one hand, it was filled with so much happiness as we were able to share in the naming celebration of our good friends, Matt and Marisa, as they gave their daughter her Hebrew name. I found myself crying at so many points during that ceremony - sad that my mother was not able to be there (in fact, she was angry that we did not bring her outfit so she could join us, and even angrier when she realized we went without her) and sad that Maya's naming ceremony a month before all of this tragedy struck will likely be the last time my children celebrate a family event with all four of their grandparents together. We were so touched today when Matt and Marisa mentioned mom during the ceremony, and so thankful to all of the people who came up to us to tell us that their thoughts and prayers are with us. It was a beautiful event, and we were lucky to participate.
While we were at the naming ceremony, Mona and Trenna visited with my mom at the hospital, and my mom's co-worker, Jo, also stopped in to visit. I am happy to report she was headache (and nausea) free today! (Dr. Olivi even called us early this morning to let us know he had checked in on her and she was doing much better). The rehab unit had a "BBQ" on the floor...burgers, dogs, cole slaw, potato salad and cookies. They had a good time there. My mother spent most of the day in therapy...speech therapy, physical therapy, occupational therapy and recreational therapy.
After the naming, my brother, father, Suzette, Joel, Elliot, Micah, Maya and I all headed over to the hospital. We were joined there by Suellen and Greg and Gail and Steven. My mom was so busy with therapy that we had very little time to visit with her, although she was overjoyed when she got a few minutes with Micah and Maya on her way to therapy. I went with my mom to her recreational therapy where they had her playing circle solitaire. It was so hard to see my mom frustrated and tired by such a seemingly simple task...playing a game that she once taught me how to play more than 20 years ago. She found it challenging to turn her head and use the vision she has to find the different piles. She had difficulty figuring out how to count from 7 to 10, and she couldn't remember the way the numbers on a clock worked. No matter what happens, this tragic disease has stolen so much already from my mother...things she can never get back.
After her therapy sessions today, my mom was exhausted. At one point, she turned to me and said "this is just so hard for me to do, Tess. I'm so tired, and I just want to go home." (I'll explain another day why my mom calls me Tess). It brought tears to my eyes, and I put my arm around her and said "I know mom, but it takes hard work to get stronger, and you can do this." Before I left this evening, she asked me to gather her things together. When I asked her why I needed to pack them all up, she asked "Aren't I going home tonight?" When I told her that no, she wasn't, and she was supposed to be in rehab for 2-3 weeks, she looked devastated.
On a positive note, tonight around 9:00, I was sitting here, starting to write this blog, when the phone rang. I looked at the caller id and saw that it was my mom's cell phone! My heart skipped a beat as I eagerly answered it. I waited a few minutes before my mom actually managed to get the phone to her ear and speak. She greeted me with her typical "Hiya" and said she just wanted to call me to say goodnight. She said that they had just given her meds, and she was going to bed. It was 100% my mom...as if there was nothing wrong at all. We chatted a few minutes and then I said goodnight and told her I would see her in the morning.
If you'd like to end on a high note, perhaps you should stop reading the rest of this blog post. Tonight, the sad is taking over, and I intend to share that here. Everyday, I sit here and read so many words of encouragement...and I appreciate each and every one of them. But, at the same time, I cringe every time someone tells us how my mom will "beat the odds" or shares a story about how someone they know with a different type of stage IV cancer went into remission. I know those words are meant as messages of hope, and I know that everyone just wants us to have faith and keep strong. But unlike so many other cancers, GBMs are fatal - they are not curable. Some people, who catch it early enough, or have them in locations that are fairly easy to remove surgically can have some really good time and years left - they live with cancer, but they are not "cured." I know everyone is well-meaning and wants to give us hope for a happy ending...but it just hurts when I hear those comments, and I'm angry at the unfairness that my mom doesn't even have a fighting chance to beat this disease. Because my mom IS a fighter, and I do believe that if there were odds of survival and cure, she could do it. My mom always used to tell us that "no one ever said life is fair." Well, she is right, because this definitely isn't fair. All we can hope for is a little more time, and I do hope for that with every fiber of my being.
Even if my mom becomes one of the "lucky" ones and manages to live another year or two (or even more), she has already been robbed of so much of herself. Her independence is gone...that went with her loss of vision, her loss of balance, and the loss of use of her left side of her body. Those are things she will never recover. She won't be able to babysit her grandchildren, or crochet an afghan, or drive herself to dinner with her friends, or take off for a girls' weekend, or any number of other things she loved to do. This disease has already destroyed so much of her brain that she will never be as she was even just a few short weeks ago. Luckily, this disease has spared her memories and her personality...she is now my mom, trapped inside a failing body.
And I am angry at the doctors who say finding it earlier wouldn't have changed the outcome. To parody a Bill Clinton phrase, it all depends on what your definition of "outcome" is. As I've said before, I understand that if your definition of outcome is life v. death, then yes, finding this cancer back in May wouldn't have changed the outcome. This GBM was fatal the minute it appeared in my mother's head, and I understand that. BUT, if "outcome" is defined by quality of life and longevity, then I absolutely believe that finding this tumor back in May would have made a difference. She could have gone through surgery, chemo and radiation before she lost her vision, her balance, her strength and her ability to walk. She might not have needed to go to rehab at all, and she could have lived comfortably in her own home during this time, walking the stairs, doing the things she most enjoyed doing. I firmly believe that we could have gotten more of the tumor, possibly buying her a bit more time. If nothing else, my mom could have had more strength to fight and LIVE in the now. I also believe she would not have endured the past few months of misery, and I think that the time she had left would have been better quality time. So, hearing that the "outcome" wouldn't be any different does not provide me any sense of comfort at all, because I am 100% certain we could have given her a bit more quality. And any doctor who says otherwise...well, just is choosing a different definition of the word "outcome."
Each day, simple things in life make me realize what I will be losing when I lose my mother. And yes, I said when. I hear one of my mom's friends pass on news of someone we know, and I realize that I will be cut off from the "grapevine." I talk about planning a trip, and I realize that I'm not sure what I will do with my children when I go out of town. My mom is one of my best friends, and I rely on her for so many little things. She is my sounding board and my outlet. In times like these, she is normally the first person I would turn to for help...and I can't because she is the one who is sick. I think of a million and nine inside jokes and little phrases that my mom and I say to each other, and I realize that there is no one else in the world who will understand what is funny about them. I miss having my mom call me everyday to say she is "touching base" to which I always respond "what base are you touching?" and my mom promptly laughs as we say "third base." There is a story there...and probably no one else would appreciate the humor in it. I think about how she tells me she is going to get her hair colored, and I ask her what color, and she responds with "blue" while we both dissolve in laughter. I wonder who else knows enough about me to share my "small world" experiences. I start singing the song "You Are My Sunshine" to my children, and the words my mother used to sing to me when I was a small child smack me between the eyes..."You are my sunshine, my only sunshine, you make me happy when skies are grey. You'll never know, dear, how much I love you. Please don't take my sunshine away. The other night, dear, as I lay sleeping, I dreamt I held you in my arms. But when I woke, dear, I was mistaken, and I hung my head and cried." I already miss my sunshine.
Happy Update
I am happy to report that while my little oatmeal fiend, Micah, and I sat eating breakfast this morning, we received our "morning update" call from my father. According to the nurses, she slept through the night, and they were just heading in to wake her up for breakfast. Seems like we may have cleared the hurdle.
We are all getting ready for a baby naming ceremony today (my mom was asking all day yesterday who was going to pick her up and take her). Mona and my cousin Trenna will head to the hospital this morning, and the rest of us will join this afternoon after the naming. Let's hope for a great day today.
We are all getting ready for a baby naming ceremony today (my mom was asking all day yesterday who was going to pick her up and take her). Mona and my cousin Trenna will head to the hospital this morning, and the rest of us will join this afternoon after the naming. Let's hope for a great day today.
Saturday, September 4, 2010
Bad Day
I'm sorry to report that today was not a good day. In fact, today was an awful day. The one thing several doctors have said to us is that this type of brain cancer is not painful...I was comforted knowing that my mother would not be in pain throughout this process. Unfortunately, today that just was not true. I hope she never has to experience this kind of pain and discomfort again.
Since Thursday, my mother has been complaining of a headache and increased pressure and squeezing behind her eye. I've been concerned that her intra-cranial pressure had been increasing. Since Thursday, I've been trying to talk to a doctor about it, but have not been able to see Dr. Olivi in person. The physician assistant said it was no big deal, and the nurses have not been passing along my mom's complaints, and the floor residents have all basically done the "not my bailiwick" response and directed me back to the neurosurgeon.
This morning, my father called with his morning update and told me that mom had been experiencing nausea. After her hospitalizations in May and a few weeks ago, I knew that meant increasing intra-cranial pressure. I immediately got on the phone trying to reach Dr. Olivi. I tried several numbers I had for him, and none of them worked. I called my dad to see if he had Dr. Olivi's card, and he did not. I called my brother to see if he had Dr. Olivi's card, and he did not. As my brother and I were talking, he was looking at Dr. Brem's card, and realized that his email address looked fairly standard (a first initial last name address). Jeremy suggested that I try using the same format for Dr. Olivi and see if we could reach him that way. I think about 10 seconds after I hit send on my email, my cell phone was ringing!
Dr. Olivi and I chatted for a bit, and he quickly reassured me that he has not been neglecting my mother. I mentioned that she had been experiencing increasing pain in her head and behind her eyes, and that I was concerned that her discomfort had escalated into nausea. I communicated that she was hurting, and had now been uncomfortable for several days and I felt that they needed to do more for her than just simply give her Tylenol. He indicated that he was aware of her increasing discomfort, and told me that he had authorized a few additional medications over the past few days to try and increase her comfort. He promised that he would be in to see my mother today, and would come after noon when we would all be there, and he would call over again to hear how she was doing and see what else he could do for her. He also told me that we would be meeting with the oncologist and the radiologist this week to discuss moving forward.
Elliot took Micah to services, and after speaking to Dr. Olivi around 11:00 am, I took Maya in the car and drove up to Hopkins. Our plan was that Elliot would likely bring Micah up to meet us after Micah's afternoon nap. When I arrived at the hospital, my sister-in-law, Jen, was already there. My mother was extremely uncomfortable, complaining of severe nausea and pain behind her eye. I learned that the morning therapy session was cut short because my mother was in too much pain. We spent time putting cold and hot compresses on her head and neck, and we talked to the nurse and got her some more anti-nausea medications.
The nurse came in and informed us that they planned to take her down for another CT scan. They also gave her some additional medications...neurontin (for nerve pain...Nugget used to take that years ago for her back pain), tramadol (for her headache) and they increased her steroid (from 2 mg every 8 hours to 2 mg every 6 hours). About 30 minutes later, the nausea seemed to ease up, and my mom was feeling well enough to eat a little pasta and some carrots for lunch. They came to take my mom for the CT scan, Jen left to go home, and I took a quick break in the cafeteria.
When I returned, my mom was just coming back from her CT scan and her nausea had increased and her pain was through the roof. At that point, she started dry heaving. I was doing everything I could to make her feel better, but I was getting angry that they were letting her sit in so much discomfort for so long. I sent Dr. Olivi another email, and I asked to speak to the floor doctor.
My Dad and Mona arrived around 3, and my mom was in terrible shape. I was trying to hold the bucket while she threw up, wipe her brow, and nurse a crying baby all at the same time. Mona immediately took over caring for my mom so I could take care of Maya - she was a huge help all day today, and frankly, she did most of the dirty work today.
By 4:00, my mom's nausea, pain and vomiting were all escalating, and I was livid. I asked the nurse to page Dr. Olivi, and I also asked to speak to the resident for the rehab wing. Initially, they said he was gone for the day, but they did reach him on the phone and got permission to give my mom some composine for the nausea. The composine finally arrived around 4:30...and that did absolutely nothing for her. By 5:00, I was furious. Jeremy and Trenna had arrived, and we were all quite concerned about my mom. Mona kept her cold hands on mom's head, and we were taking turns helping my mom hold the bucket (in truth, Mona was doing most of the work...I took a few shifts, but the baby just kept needing to nurse all day long). Trenna helped collect the puke buckets and bring them in the bathroom and bring us out fresh buckets.
Jeremy also sent Dr. Olivi an email asking him to get in touch with us, and I sent a second email to him. We were getting extremely worked up by the lack of response. In the middle of all of this, my mom's friend and co-worker, Gonzalo, arrived to visit. I felt terrible that she really was not in a position to have a good visit with him, but she was so happy he took the time to come see her. He brought her a beautiful little frame filled with flowers with a lovely poem inscribed around the edges. I read the card and the poem to my mom, and she thought it was beautiful. Unfortunately, Gonzalo couldn't stay long because my mom was so sick. When he left, my mother turned to me (as she does EVERY time Gonzalo's name comes up) and said, "I really like Gonzalo...he is such a kind man, and he truly is such a Gentleman."
Finally, at 6:00, I got an email from Dr. Olivi saying he was unexpectedly diverted to Bayview for an emergency, but he would be in touch with us soon. It was almost 30 more minutes before the nurse came in to say that Dr. Olivi was on the phone. I went to speak to him, and he said that he was looking at the scans and he felt that my mom's tumor had grown slightly, but it did not look like the "mass effect" (the swelling/pressure due to the tumor) had changed much at all. He said that her increased symptoms could have something to do with the tumor growth, but it could simply be due to the decreased steroids over the past few days...that my mother may not be tolerating the lower dosage. He said he was going to give her another 10 mg of decadrone to try and immediately reduce the pressure, and then he would be increasing her oral steroid dosage to 4 mg every 6 hours. He felt that she would quickly experience relief and then we would worry about trying to reduce the dosage a bit later. Dr. Olivi also assured me that he was sending over his resident, who would stay and oversee things until my mother was feeling better.
After our phone conversation, the nurse informed me that the rehab resident would also be in to see us shortly. Within 30 minutes, both residents were in the room, and there was a nurse on site to administer the decadrone and more zofran. The rehab resident also prescribed some reglan to help with the nausea. The rehab resident is also a doctor of osteopathy, and he spent some time manipulating and adjusting my mother's neck to relieve some of the kinked muscles in her neck.
Finally, with the decadrone on board, and more anti-nausea medications...my mom started to feel better. It was such a relief to all of us! We did also get an apology from the residents and Dr. Olivi for taking so long to relieve my mother's pain. When we finally left around 7:45, the pain in her eyes seemed to be improving, and the nausea was finally beginning to subside. We hoped she would fall asleep and have a good evening.
About 2 minutes ago, I received a call from my father with the latest update from the hospital. They said mom is currently resting comfortably! They said she does seem a bit confused (not really a surprise with all the additional medication they had to give her today), but I expect that will pass tomorrow. What a relief!
I'm hoping tomorrow is a much better day, and I am hoping that they can keep things under control with better dosages of the steroids. I don't want my mother to have to experience another minute of pain...and I certainly never want her to live through a day like today again. Seeing her that way...and being able to do nothing to help her...was terrible. I am so angry and frustrated that the doctors let it get that awful. She has been progressively complaining about the headaches and other symptoms, and I wish they had acted faster to respond to her discomfort. I have been told they will be more proactive with monitoring her pain and will be more careful about reducing her steroid dosage in the future.
No pictures today...but perhaps I can snag a few tomorrow.
Since Thursday, my mother has been complaining of a headache and increased pressure and squeezing behind her eye. I've been concerned that her intra-cranial pressure had been increasing. Since Thursday, I've been trying to talk to a doctor about it, but have not been able to see Dr. Olivi in person. The physician assistant said it was no big deal, and the nurses have not been passing along my mom's complaints, and the floor residents have all basically done the "not my bailiwick" response and directed me back to the neurosurgeon.
This morning, my father called with his morning update and told me that mom had been experiencing nausea. After her hospitalizations in May and a few weeks ago, I knew that meant increasing intra-cranial pressure. I immediately got on the phone trying to reach Dr. Olivi. I tried several numbers I had for him, and none of them worked. I called my dad to see if he had Dr. Olivi's card, and he did not. I called my brother to see if he had Dr. Olivi's card, and he did not. As my brother and I were talking, he was looking at Dr. Brem's card, and realized that his email address looked fairly standard (a first initial last name address). Jeremy suggested that I try using the same format for Dr. Olivi and see if we could reach him that way. I think about 10 seconds after I hit send on my email, my cell phone was ringing!
Dr. Olivi and I chatted for a bit, and he quickly reassured me that he has not been neglecting my mother. I mentioned that she had been experiencing increasing pain in her head and behind her eyes, and that I was concerned that her discomfort had escalated into nausea. I communicated that she was hurting, and had now been uncomfortable for several days and I felt that they needed to do more for her than just simply give her Tylenol. He indicated that he was aware of her increasing discomfort, and told me that he had authorized a few additional medications over the past few days to try and increase her comfort. He promised that he would be in to see my mother today, and would come after noon when we would all be there, and he would call over again to hear how she was doing and see what else he could do for her. He also told me that we would be meeting with the oncologist and the radiologist this week to discuss moving forward.
Elliot took Micah to services, and after speaking to Dr. Olivi around 11:00 am, I took Maya in the car and drove up to Hopkins. Our plan was that Elliot would likely bring Micah up to meet us after Micah's afternoon nap. When I arrived at the hospital, my sister-in-law, Jen, was already there. My mother was extremely uncomfortable, complaining of severe nausea and pain behind her eye. I learned that the morning therapy session was cut short because my mother was in too much pain. We spent time putting cold and hot compresses on her head and neck, and we talked to the nurse and got her some more anti-nausea medications.
The nurse came in and informed us that they planned to take her down for another CT scan. They also gave her some additional medications...neurontin (for nerve pain...Nugget used to take that years ago for her back pain), tramadol (for her headache) and they increased her steroid (from 2 mg every 8 hours to 2 mg every 6 hours). About 30 minutes later, the nausea seemed to ease up, and my mom was feeling well enough to eat a little pasta and some carrots for lunch. They came to take my mom for the CT scan, Jen left to go home, and I took a quick break in the cafeteria.
When I returned, my mom was just coming back from her CT scan and her nausea had increased and her pain was through the roof. At that point, she started dry heaving. I was doing everything I could to make her feel better, but I was getting angry that they were letting her sit in so much discomfort for so long. I sent Dr. Olivi another email, and I asked to speak to the floor doctor.
My Dad and Mona arrived around 3, and my mom was in terrible shape. I was trying to hold the bucket while she threw up, wipe her brow, and nurse a crying baby all at the same time. Mona immediately took over caring for my mom so I could take care of Maya - she was a huge help all day today, and frankly, she did most of the dirty work today.
By 4:00, my mom's nausea, pain and vomiting were all escalating, and I was livid. I asked the nurse to page Dr. Olivi, and I also asked to speak to the resident for the rehab wing. Initially, they said he was gone for the day, but they did reach him on the phone and got permission to give my mom some composine for the nausea. The composine finally arrived around 4:30...and that did absolutely nothing for her. By 5:00, I was furious. Jeremy and Trenna had arrived, and we were all quite concerned about my mom. Mona kept her cold hands on mom's head, and we were taking turns helping my mom hold the bucket (in truth, Mona was doing most of the work...I took a few shifts, but the baby just kept needing to nurse all day long). Trenna helped collect the puke buckets and bring them in the bathroom and bring us out fresh buckets.
Jeremy also sent Dr. Olivi an email asking him to get in touch with us, and I sent a second email to him. We were getting extremely worked up by the lack of response. In the middle of all of this, my mom's friend and co-worker, Gonzalo, arrived to visit. I felt terrible that she really was not in a position to have a good visit with him, but she was so happy he took the time to come see her. He brought her a beautiful little frame filled with flowers with a lovely poem inscribed around the edges. I read the card and the poem to my mom, and she thought it was beautiful. Unfortunately, Gonzalo couldn't stay long because my mom was so sick. When he left, my mother turned to me (as she does EVERY time Gonzalo's name comes up) and said, "I really like Gonzalo...he is such a kind man, and he truly is such a Gentleman."
Finally, at 6:00, I got an email from Dr. Olivi saying he was unexpectedly diverted to Bayview for an emergency, but he would be in touch with us soon. It was almost 30 more minutes before the nurse came in to say that Dr. Olivi was on the phone. I went to speak to him, and he said that he was looking at the scans and he felt that my mom's tumor had grown slightly, but it did not look like the "mass effect" (the swelling/pressure due to the tumor) had changed much at all. He said that her increased symptoms could have something to do with the tumor growth, but it could simply be due to the decreased steroids over the past few days...that my mother may not be tolerating the lower dosage. He said he was going to give her another 10 mg of decadrone to try and immediately reduce the pressure, and then he would be increasing her oral steroid dosage to 4 mg every 6 hours. He felt that she would quickly experience relief and then we would worry about trying to reduce the dosage a bit later. Dr. Olivi also assured me that he was sending over his resident, who would stay and oversee things until my mother was feeling better.
After our phone conversation, the nurse informed me that the rehab resident would also be in to see us shortly. Within 30 minutes, both residents were in the room, and there was a nurse on site to administer the decadrone and more zofran. The rehab resident also prescribed some reglan to help with the nausea. The rehab resident is also a doctor of osteopathy, and he spent some time manipulating and adjusting my mother's neck to relieve some of the kinked muscles in her neck.
Finally, with the decadrone on board, and more anti-nausea medications...my mom started to feel better. It was such a relief to all of us! We did also get an apology from the residents and Dr. Olivi for taking so long to relieve my mother's pain. When we finally left around 7:45, the pain in her eyes seemed to be improving, and the nausea was finally beginning to subside. We hoped she would fall asleep and have a good evening.
About 2 minutes ago, I received a call from my father with the latest update from the hospital. They said mom is currently resting comfortably! They said she does seem a bit confused (not really a surprise with all the additional medication they had to give her today), but I expect that will pass tomorrow. What a relief!
I'm hoping tomorrow is a much better day, and I am hoping that they can keep things under control with better dosages of the steroids. I don't want my mother to have to experience another minute of pain...and I certainly never want her to live through a day like today again. Seeing her that way...and being able to do nothing to help her...was terrible. I am so angry and frustrated that the doctors let it get that awful. She has been progressively complaining about the headaches and other symptoms, and I wish they had acted faster to respond to her discomfort. I have been told they will be more proactive with monitoring her pain and will be more careful about reducing her steroid dosage in the future.
No pictures today...but perhaps I can snag a few tomorrow.
Friday, September 3, 2010
Losing the Days
I realize that I've lost the days...I no longer know the day of the week or the date. For those of you who know me well, that isn't much of a surprise, because even when I'm not in "crisis" mode, I barely have a clue about the date or the day of the week. But now, it seems the days all flow together - it is getting hard for me to differentiate one day from the next.
Today, our personal challenge was a last minute cancellation from our babysitter (not the one who started on Monday, but our regular sitter who worked with us all summer this year and last year). She had an emergency crop up and it was unavoidable, but I realize that I'm not coping with these types of unexpected bumps in the road as well as I normally would. After taking some time to panic about how we would manage the day, Elliot said he would stay home with Micah while I took Maya up to Hopkins to visit my mom. Thank goodness for the change in policy that allows us to bring the baby in to see my mom!
We kicked off the day with another visit from the Maryland Infants and Toddlers program, this time to evaluate Micah. It was actually an extremely informative evaluation - I learned a lot about Micah's capacity to learn and process language, and they shared several techniques for helping him focus and for dealing with some of his recent behavioral outbursts. It was no surprise that they did not qualify him for any support services, but I was surprised to find that they evaluated him as slightly delayed (2 months) in his gross and fine motor skills but advanced in his language and social skills. They left us some great information about how we can work to improve his skills.
I think I'm sharing this information here because normally I would share it with my mother. For months, I've been batting around my concerns and frustrations with her, and she has always given me ideas about how to cope, where I should seek help, and to encourage me to trust my instincts. Ever since May, however, things just haven't been the same, and I've missed having her talk me through the process and sharing her experiences raising us. During our visit today, I was able to give her an update about the meeting, and she seemed genuinely interested in the appointment, and glad to hear that we are on a positive path with Micah.
I arrived at the hospital around 12 today, and went straight to see my mother. I knew she had just been through three hours of physical therapy, and was thrilled to find her awake, dressed in regular clothes and sitting in a chair. She seemed alert and in great spirits, but her head was hurting again. She even told me she wanted to try to go to work on Monday (and gave me a dirty look when I explained that she could not go in on Monday). Once again, I spoke to the nurse about the head pain. I have to say I'm a bit concerned about her discomfort behind her eyes...I really wish a doctor would come and discuss it with us and explain why they are NOT concerned.
Maya and I spent an hour and a half with my mom. We chatted, I read her some of your wonderful messages, and she again told me that she wants to sit down and dictate a blog post to thank all of you for your wonderful support. I will try and make that happen this weekend. My mom had just enough time to eat her lunch before her next round of therapy arrived at 1:30. I decided to make a quick run to the cafeteria and then hang out in the family lounge. Before I left, the physical therapist explained the rehab process to me. As I understand it, today was largely about evaluating my mom and establishing her "baseline." She will receive therapy at least 5 out of 7 days each week for three hours each day, and it will include speech, physical therapy, occupational therapy and recreational therapy. They will be meeting with us on Wednesday to discuss the goals and realities with us, so that should be an informative meeting.
A little after 2, my Dad and Mona arrived. The therapist ended up changing mom's therapy time, so we returned to her room for another visit. She was starting to get a bit sleepy and wanted time to nap before everyone else arrived, so we decided to leave her for a bit and head back down to the cafeteria. While we were there, Diane and Joey and Suzette and Joel joined us.
We headed back upstairs, and mom was still doing well. They had put her back in bed so she could nap, but we all sat and chatted with her. We were there until a little after 5:00, and we decided to leave so that she could rest. Jeremy was unable to join us today, but he got to call and have a nice chat with my mom on the phone. Tomorrow, he is going to wait for our cousin Trenna to arrive and bring her to the hospital.
Actually, Jeremy and I had several good conversations today...laughing a little, crying a little, talking about our situation and our different ways of coping, and naturally, snapping at each other a bit (it would not be a conversation between us without a little bit of snark). We both wanted each other to know that we are here for each other, and understand. I reassured Jeremy that he needed to make sure he stays on top of things at work and that I understood that. In fact, mom had asked me to tell Jeremy that she wanted him to focus on work because she was "very busy and not bored at all" in rehab. He, like everyone else, tried to tell me that I should take more space and not come to the hospital as much. I explained to Jeremy that I *have* to be there...for me. I made it clear that I don't expect that from anyone else, but I go for me. While I find it difficult to be there sometimes, I NEED to be there to soak up every minute I can, and it is harder for me when I'm not there. If she was in rehab near the house, I'd probably go back after putting the kids to bed, even if it was just to watch her sleep for a little while. I understand why others need breaks during these times, but I just can't take that space right now.
I'm not sure that I have any "big" news to report - mom looked good, she seems sharp, she is anxious to do her therapy and start making progress, and it was great to see her in regular clothing again.
Despite all of this progress...I've been having trouble keeping the sad at bay the past 24 hrs. I seem to keep bursting into tears all over the place. Tonight, Micah saw me crying and came over and kept saying "Mommy eyes" and trying to touch my tears. He always has a way to bring a smile to my face, even though he just doesn't understand. Elliot took Maya to services with him tonight so Micah and I could have a bit of alone time. I couldn't stop laughing at one point when he took the oven mitts and put them on his hands and ran around the house with them. I found myself reaching for the phone, wanting to share the story with my mom...and then the tears came again. Luckily, Micah decided it was time to go to the potty (no, he isn't really using the potty, but he likes to sit on his little potty and then throw perfectly clean toilet paper in the toilet, and I like to indulge him in the hope that it will lead to potty training). We also spent some time this evening looking out the window at a neighbor's cat sleeping on the grill (I got a chorus of MEOWS from Micah).
I know tomorrow I will be heading back to the hospital, and I think it will be another busy day with visitors. I'm looking forward to seeing my cousin Trenna, who is coming into town to see mom. Wow...another long post for very little news.
Today, our personal challenge was a last minute cancellation from our babysitter (not the one who started on Monday, but our regular sitter who worked with us all summer this year and last year). She had an emergency crop up and it was unavoidable, but I realize that I'm not coping with these types of unexpected bumps in the road as well as I normally would. After taking some time to panic about how we would manage the day, Elliot said he would stay home with Micah while I took Maya up to Hopkins to visit my mom. Thank goodness for the change in policy that allows us to bring the baby in to see my mom!
We kicked off the day with another visit from the Maryland Infants and Toddlers program, this time to evaluate Micah. It was actually an extremely informative evaluation - I learned a lot about Micah's capacity to learn and process language, and they shared several techniques for helping him focus and for dealing with some of his recent behavioral outbursts. It was no surprise that they did not qualify him for any support services, but I was surprised to find that they evaluated him as slightly delayed (2 months) in his gross and fine motor skills but advanced in his language and social skills. They left us some great information about how we can work to improve his skills.
I think I'm sharing this information here because normally I would share it with my mother. For months, I've been batting around my concerns and frustrations with her, and she has always given me ideas about how to cope, where I should seek help, and to encourage me to trust my instincts. Ever since May, however, things just haven't been the same, and I've missed having her talk me through the process and sharing her experiences raising us. During our visit today, I was able to give her an update about the meeting, and she seemed genuinely interested in the appointment, and glad to hear that we are on a positive path with Micah.
I arrived at the hospital around 12 today, and went straight to see my mother. I knew she had just been through three hours of physical therapy, and was thrilled to find her awake, dressed in regular clothes and sitting in a chair. She seemed alert and in great spirits, but her head was hurting again. She even told me she wanted to try to go to work on Monday (and gave me a dirty look when I explained that she could not go in on Monday). Once again, I spoke to the nurse about the head pain. I have to say I'm a bit concerned about her discomfort behind her eyes...I really wish a doctor would come and discuss it with us and explain why they are NOT concerned.
Maya and I spent an hour and a half with my mom. We chatted, I read her some of your wonderful messages, and she again told me that she wants to sit down and dictate a blog post to thank all of you for your wonderful support. I will try and make that happen this weekend. My mom had just enough time to eat her lunch before her next round of therapy arrived at 1:30. I decided to make a quick run to the cafeteria and then hang out in the family lounge. Before I left, the physical therapist explained the rehab process to me. As I understand it, today was largely about evaluating my mom and establishing her "baseline." She will receive therapy at least 5 out of 7 days each week for three hours each day, and it will include speech, physical therapy, occupational therapy and recreational therapy. They will be meeting with us on Wednesday to discuss the goals and realities with us, so that should be an informative meeting.
A little after 2, my Dad and Mona arrived. The therapist ended up changing mom's therapy time, so we returned to her room for another visit. She was starting to get a bit sleepy and wanted time to nap before everyone else arrived, so we decided to leave her for a bit and head back down to the cafeteria. While we were there, Diane and Joey and Suzette and Joel joined us.
We headed back upstairs, and mom was still doing well. They had put her back in bed so she could nap, but we all sat and chatted with her. We were there until a little after 5:00, and we decided to leave so that she could rest. Jeremy was unable to join us today, but he got to call and have a nice chat with my mom on the phone. Tomorrow, he is going to wait for our cousin Trenna to arrive and bring her to the hospital.
Actually, Jeremy and I had several good conversations today...laughing a little, crying a little, talking about our situation and our different ways of coping, and naturally, snapping at each other a bit (it would not be a conversation between us without a little bit of snark). We both wanted each other to know that we are here for each other, and understand. I reassured Jeremy that he needed to make sure he stays on top of things at work and that I understood that. In fact, mom had asked me to tell Jeremy that she wanted him to focus on work because she was "very busy and not bored at all" in rehab. He, like everyone else, tried to tell me that I should take more space and not come to the hospital as much. I explained to Jeremy that I *have* to be there...for me. I made it clear that I don't expect that from anyone else, but I go for me. While I find it difficult to be there sometimes, I NEED to be there to soak up every minute I can, and it is harder for me when I'm not there. If she was in rehab near the house, I'd probably go back after putting the kids to bed, even if it was just to watch her sleep for a little while. I understand why others need breaks during these times, but I just can't take that space right now.
I'm not sure that I have any "big" news to report - mom looked good, she seems sharp, she is anxious to do her therapy and start making progress, and it was great to see her in regular clothing again.
Despite all of this progress...I've been having trouble keeping the sad at bay the past 24 hrs. I seem to keep bursting into tears all over the place. Tonight, Micah saw me crying and came over and kept saying "Mommy eyes" and trying to touch my tears. He always has a way to bring a smile to my face, even though he just doesn't understand. Elliot took Maya to services with him tonight so Micah and I could have a bit of alone time. I couldn't stop laughing at one point when he took the oven mitts and put them on his hands and ran around the house with them. I found myself reaching for the phone, wanting to share the story with my mom...and then the tears came again. Luckily, Micah decided it was time to go to the potty (no, he isn't really using the potty, but he likes to sit on his little potty and then throw perfectly clean toilet paper in the toilet, and I like to indulge him in the hope that it will lead to potty training). We also spent some time this evening looking out the window at a neighbor's cat sleeping on the grill (I got a chorus of MEOWS from Micah).
I know tomorrow I will be heading back to the hospital, and I think it will be another busy day with visitors. I'm looking forward to seeing my cousin Trenna, who is coming into town to see mom. Wow...another long post for very little news.
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