Friday, December 31, 2010
I cannot thank all of you enough for your support. Your presence in the waiting room, and comments on this blog mean so much to my mom and my family. It is unbelievable, and I cannot describe your impact.
That being said, we are making a system for people wishing to visit my mom. We have decided that we would like people to let us know before they enter her hospital room. Please wait in the waiting room, and call or text my sister if you arrive and no one is out there 347-392-9116 (Aynsley knows about this, I am not just playing a mean joke on her). You can also text me or my dad. PLEASE understand that if you are someone that has dropped by in the past, THAT IS COMPLETELY WONDERFUL! We're not trying to be passive aggressive or anything like that. This is not directed towards anyone in particular, we're just trying to create a system where we can have visitors at the best time for my mom. The truth is, there have been a lot of people that have just dropped in the room to say hi to my mom. And honestly, the fact that people have done that is really comforting to me. I am glad that people are so eager to see my mom and I do not regret how casual our stay in the hospital has been.
Part of our decision to create this system is due to the fact that my mom is starting chemo soon, and she needs her rest, and she gets excited when people come in. Part of it is sometimes a nurse is in the room and they need to get their job done and get out. Part of it is that Aynsley and I want as much family time with our mom and dad before Aynsley leaves for NY and I start school.
I don't want to discourage those of you who have not made it to the hospital yet, or those of you who are on the fence about coming to visit. If you are considering a visit, please come. It means so much to us.
I really want to stress these points: a) this is just an attempt to bring visitors in when they are best for my mom, and b) the fact that we even need to create a system like this is the greatest thing about all of you. Your dedication to my mother, your eagerness to see her and speak with her, your presence at the hospital, your comments on this blog and the mere fact that you are even following this blog are all reasons why we love you more than we can say. And they are the reasons why she is going to get stronger and healthier. You are the reason she will have the strength to come home and continue on with her beautiful, blessed life which you all fill to the brim.
I cannot thank you enough for that. Love.
Thursday, December 30, 2010
From my perspective, today was a great day for Mom. I arrived at the hospital around 11:45am after dropping Gary off at the airport (less tears this time around, though not by much) hoping to make it in time for her chemo treatment. When I got there, Mom was totally awake, alert and snipping at my dad. It reminded me so much of the normal married bickering that occasionally erupts in their speech and I took advantage of the fact that she is pretty much blind to double over in silent laughter as my dad sputtered his defenses. Then she told him he was being too defensive. With a smirk and a twinkle in her eye.
Chemo didn't end up happening today-the oncologist was concerned about swelling near the implantation site and wanted to have it looked at before using it. It was a tense 45 minutes in the waiting room for us, though-the procedure was supposed to take 10 minutes and 45 minutes later, we were still waiting. Mom was totally fine, even a bit relieved to have the dressing off the wound. She kept itching it, which she gleefully said "freaks out" my dad. She had a CT scan of her head to check on the surgery recovery-we should have the results tomorrow.
As we were leaving the scan room, she thanked all of the technicians for their help, then yelled "Happy new Year!" I think that she is 100% aware of how freaking cute she is. She's milking the Kermit voice, the oversized PJs, the fact that she knows all of the nurses and technicians, for comedic effect. Dad said a nurse told him they all request her room and I believe it-she's a doll and there's always someone else in the room to help. But in addition to the sweetness, she also has some amazing zingers. Today as she was about to fall asleep, my dad commented on how cute she was. Another friend agreed, "like an angel." She quips from bed, "an angel with a shaved head!" without missing a beat.
But I digress.
It was a good day because it was the first day without ice packs on her neck and lower back. It was a good day because she ate a quarter of a real tuna sandwich with pickles and lettuce that she held in both hands. It was a good day because one of the nurses who has worked with her on and off for the whole week pulled me aside in the hall (he wasn't working with her today) and told me she's getting stronger. It was a good day because an amazing friend of mine who has some experience visiting people in hospitals asked her point blank how she copes with everything and Mom told her: "Every day I set an intention. I knew I needed to get my strength up and to do that, I had to eat. So I decided to get my appetite back. It's a vicious cycle, but I take it one day at a time, fighting as hard as I can." My friend then pulled me aside and said that she was shocked by how clear Mom is-despite being on medications that take two pages to list, she is lucid and fierce.
Goals for tomorrow include having an opthamologist look at her eyes. We all feel that it's not normal to go blind in four days and the doctors were talking about doing an MRI to see if the blindness is a result of the cancer spreading to her eyes or optic nerves or if it's a byproduct of the cancer already in her spinal column. I'm not sure why anyone would do an MRI before seeing an eye doctor-the MRI is really uncomfortable for her and she's already had two in the last week. We also want to increase her rest time-today was another busy day with procedures and LOTS of visitors. Tomorrow she will probably be having two if not more doctor visits (and maybe chemo, too) in addition to her radiation and needs to rest.
Thanks to everyone for posting comments on the blog, sending me emails, sending me and Ross and Dad texts, etc. We continue to read everything to her and she gains strength from you.
Wednesday, December 29, 2010
Full disclosure: I am not eating as well as I should be. Though I am a nutritionist, the past week has seen me skipping breakfast, eating chocolate covered graham crackers and
drinking diet coke. Last night some family went out for Mexican food and I had them bring me back nachos with beans and guacamole. For dinner. At 10pm. Yikes. After eating, I went back in to see Mom and she asked what I had for dinner. I admitted that it was a bad choice, but she sort of got fixated on it. I told her I had plenty of leftovers and would be happy to give her some beans and guacamole, but she decided to wait until tomorrow. So I brought it home and figured I'd bring it for her for lunch today. Well, at 4am, she woke up with an insatiable hankering for Mexican food. She and my dad were awake from 4-7am trying to get something that would satisfy. Finally, the cafeteria opened and they ordered something, but by that time, she was exhausted and fell fast asleep. They both did. And then, her radiation treatment that was originally scheduled at 3pm was pushed to 10am, which wasn't communicated. So, they were sound asleep when the technicians came to get them and they rushed for treatment. In the rush, Mom didn't get her pre-radiation pain medication. So, by 11:30 when I arrived at the hospital (with leftover nachos), she was in a lot of pain. Ross gave her a great massage that she raved about for the rest of the day, and eventually the nurses got her pain medication caught up, but it was a reminder for all of us that she needs a little pre-funk before radiation.
Luckily, that was all of the treatment on the agenda today. And I stuck to my guns and vastly limited the people who got to see her. She still had plenty of visitors, but they were well spaced out and three at a time, max. She got in an awesome nap in the evening in addition to the in and out sleeping that goes on during the day. I'm hopeful that she'll feel better tomorrow after having a restful day today.
Tomorrow will be her first chemotherapy treatment. It will be administered via the Ommaya Reservoir that was implanted a couple of days ago. The oncologist told us the only side effect is headache, which she already has. She shouldn't feel nauseous or otherwise uncomfortable. Fingers crossed for an easy treatment.
Other notes on today:
- A dietitian finally came up to ask about her eating habits. We told her she wasn't eating much at all and they ordered a protein shake for her that she LOVES. Super loves. She even called it the best thing ever and asked if she could buy them at the grocery store.
- Her vision is almost completely gone.
- Today was the first day she's been disoriented at all. It was brief, but she got confused this morning in the radiation department and my dad had to explain why she was there. She also had a moment where she was telling me something about Hillary Clinton that I couldn't follow, but that may have been a dream. She also had several moments of stellar memory and put us all to shame in recalling family stories
- She LOVES the blog comments and asks for them to be read to her. I also read her all of the people who sent their love via Facebook (mostly people I went to middle and high school with and haven't seen in 10 years) and she was so touched-of course she remembers them all.
- She thanked Gary for coming to town and being a support for me; she told him that she knew that I needed the support and was so happy that he is in my life.Then she told him to send her love to his parents. She really is the sweetest person around.
- She got her Mexican food! I brought in the leftover nachos, scraped the beans out, mashed them up with the guacamole and that was lunch. She said it wasn't the best Mexican food ever, but it hit the spot.
Tuesday, December 28, 2010
Mom requested Starbucks oatmeal for breakfast, so I picked that up on the way. She ate nearly a third of it, plus some banana and yogurt-biggest breakfast yet. She then had to have a barium swallow test-she's been having a lot of difficulty swallowing and our fabulous nurse, T, wanted to make sure she wasn't aspirating any of her food-the last thing we need is pneumonia. I didn't get the see the barium test, but it came back good-no food or liquid in the lungs! But she needs to be careful and can only eat soft and cut up foods.
Today, in addition to the barium swallow test, Mom had a radiation treatment and a neurological evaluation. She also had an enormous crowd of visitors in the waiting room that I did a terrible job of screening. I know how much she appreciates all of the support, so I allowed everyone to go back whenever they wanted to. As a result, she got very little rest today and has been exhausted. I told her and my dad tonight that the priority for tomorrow is that she get plenty of good rest and quality naps.
Her vision has continued to deteriorate. She's having a lot of visual hallucinations: a sandwich falling off the wall, drinking straws on her blanket. She's also seeing colors where they aren't and seeing more people in the room than who are there. She thought Ross was Claudia today (and trust me, they look NOTHING alike), and she couldn't tell who I was on several occasions. Her hearing is worse, also. She has some ringing in the ears in addition to some other auditory hallucinations. Nothing too annoying, but we do have to speak clearly and loudly for her to understand us. I should note here that she's completely aware of the hallucinations, even saying at one point that she was hallucinating. She doesn't seem to mind, either; she more takes everything with an "isn't that interesting" attitude.
Sweet things today:
- She LOVED being read her cards, emails and blog posts. PLEASE keep your comments coming-she really enjoys hearing what people have to say and takes comfort in it. She asked me to read the comments again and again as she was trying to drift into a nap this evening.
- I told her all of the people who were in the waiting room, listing at least 12 people at that time. She nodded and said "That's exactly what I need." Mom truly believes in the power of positive thought, prayer, good wishes, mediation, etc. Knowing how many people she has in her corner gives her strength.
- She thanked me on numerous occasions for being here with her, saying she had no idea how people who didn't have help could be in the hospital. When one of the nurses commented how nice it was to have daughters, she nodded and said, "oh, yes. And my son is amazing, too!"
Some of my old, dear friends came to visit today-their presence was so amazing. When I told Mom they were here, she said "You're kidding!" and proceeded to ask in detail about how they were, how their parents were and how friends of their friends were. She remembers everything, it's amazing.
On the agenda for tomorrow:
- She needs to rest and I need to be a good gatekeeper of that. Friends and family coming to the hospital is so wonderful and so much appreciated. If you come, you're very welcome to hang out in the waiting room and maybe see Mom, but Ross, Dad and I have made a pact to be much better about controlling who and when people go into her room. And the nurse told us today that no more than 2 more people should come at a time.
- Radiation treatment and a blood draw. And that's IT for medical procedures (I hope)
- I need to work out! I've been doing a strength training circuit with my parents' little hand weights every other day, but missed it today due to oversleeping. Tomorrow it's either that or a run outside-non negotiable, no matter what time I wake up. I need to remember that I can't be an effective caretaker unless I take care of myself. My dad needs to remember that, too.
As devastating as this illness has been, as rapidly as it's progressed and as much as it's taken away, it hasn't taken any of her mental clarity. I am so lucky to be able to go home at night after telling her how much I love her and know that she understands.
Monday, December 27, 2010
My mom sounds like Kermit The Frog. I don't know how else to describe it; it's adorable. I know that the speech changes are a result of the tumors pressing on her brain stem or
otherwise interfering with nerve function, but she sounds so damn cute that it's not a tragic side effect to me. The sad ones are plentiful: loss of vision, loss of balance, pain, discomfort, difficulty swallowing, auditory hallucinations, loss of hearing...I could go on and on. It's also fascinating to watch the rapid progression of the cancer-two days ago, she had double vision. Yesterday, the double vision was much worse and her depth perception left. Today she couldn't tell the difference between me and her African-American nurse. I won't be surprised if tomorrow she can't see at all.
Today was...wow. SO intense. The day started with me crying because Gary had to go home-I was planning to drive him to the airport around 8:45am and then head to the hospital. I know he has to go home at some point (and so do I), but I really didn't feel ready for him to leave, especially knowing that today would be the first real business day at the hospital since I've been here. I kept checking the flight status online as I futzed about the house getting ready for the day. It was my best morning yet-I folded all of the clothes I've worn, found my watch and put it on, washed my hair and made and ate breakfast. And compulsively checked Gary's flight status. It kept saying delayed one minute. For an hour. Finally I broke down sobbing and explained that I wasn't trying to guilt trip him, but since he was supposed to fly into Newark and NJ Transit wasn't running and it wasn't safe to be in a cab and his flight would probably be delayed, maybe he could just stay for another day...I know he felt bad and was trying to figure out how to possibly change the flight when I refreshed the flight status and it was cancelled. Best news in a day.
While Gary stayed on hold with Expedia (2 hours, folks!) I left for the hospital. (Gary came later with Ross and Claudia). When I arrived, Mom had already had an MRI on the middle and lower part of her back. The MRI showed that the cancer was all over her spine (which we suspected) and the oncologist determined that the radiation treatment should go all down her spine. This means that her radiation treatments will be a little longer in duration and will probably make her more tired. Today the radiation treatment included more mapping on her mid and lower spine since the first two treatments were only of her head and neck. The position she needs to be in for radiation is really uncomfortable for her and makes it hard for her to breathe since she already has trouble swallowing. She never complains about it, but always makes sure to tell the radiation technicians and us to make sure she's breathing okay.
So, I arrived after she had tried to eat a little bit of breakfast. Shortly thereafter, the hospitalist and neurosurgeon arrived to discuss the next bit of treatment: chemotherapy. Since the cancer is progressing so rapidly, the doctors suggested starting chemotherapy sooner rather than later. The original idea was 5 weeks of radiation followed by chemo, but it's clear that if she has any chance of relieving symptoms, she'll need to start chemo immediately. The chemo needs to be administered directly into the head through what's called an Ommaya Reservoir (not sure if I'm spelling that correctly), which needed to be surgically implanted. The neurosurgeon told us we could do the surgery today or sometime this week and Mom elected to do it today. Directly following radiation. So we scheduled radiation at 3pm and surgery at 5pm. I asked if she would have a local or general anesthesia and the surgeon said definitely general, which made me very nervous, especially with her swallowing difficulty. I asked if he could do a local and he said he really couldn't, but that the surgery was very quick-15 minutes or so-and that that was really the best bet. So I asked Mom what she wanted to do and she said surgery.
The radiation treatment went well-Ross, Dad and I had a sit down with the nurse during the treatment and got some questions answered. Immediately after the treatment, Mom was queasy, but didn't vomit. We pretty much went directly from radiation to surgery. The four of us had a lot of waiting time in the OR prep room until the anesthesiologist came in and assessed her. He explained that he would give her the medicine and she would go to sleep and he would put in a breathing tube during the surgery. After the surgery was over, he'd make sure her throat wasn't swollen and remove the tube and wake her up. But there was a chance that her throat wouldn't be okay for them to remove the tube in which case they'd keep her asleep and move her to ICU until they thought she could breathe on her own. She said okay and he left to go prepare. Then she grabbed our hands and said, "Here's the plan. I'm going to have a successful surgery, the breathing tube is going to come out just fine afterwards and I'm going to breathe perfectly. I'll see you in a couple of hours." Then she squeezed all of our hands tightly, to seal the deal.
Well, that was the plan, and that's what happened. The surgery went well and she was back in her room two hours later, feeling better than she had all day. Despite having the front quarter of her head shaved (which she chalked up to her new breakdancing hair-do), her eyes were open wider than they've been in days, her pain was down despite being detached from her meds for 5 hours and her throat felt better-she had an easier time swallowing. The friends and family who were in the waiting room rotated in to say hi and she was happy to visit with everyone for a few minutes. She joked about her new hair do, asked friends for foot rubs and proudly introduced Ross, Claudia, Gary and me to her new nurses. It ended up being a great night.
Other things worth noting from the day:
- we do assisted yoga stretches in bed-mostly hamstring lengthening and hip opening. When the OR nurse came in the prep room to find mom in Happy Baby pose, she said she never seen anything quite like that and Mom told her it should be required pre-op.
- we overheard Mom's nurse tell another nurse that Mom was a rock star
- Mom's blood pressure has come down a lot from yesterday's high of 170/100 (maybe a medication side effect)
- we had a visit from the speech pathologist who wants to test Mom's swallowing tomorrow. She's concerned that Mom is aspirating liquids and that she may develop pneumonia. No more drinking through a straw and she needs to be propped up to almost 90 degrees when eating and drinking.
Finally, I had so many emails, texts and voicemails today and I simply didn't get a chance to reply-we were in the radiation room, the OR, meeting with doctors, speech therapists, etc. And it's now 11:30 and I'm exhausted. But know that we all SO appreciate all of the messages and thoughts of love and support we've received and I'll reply as soon as I have some down time. Also, if I do respond during the day, it's via my phone, so please excuse all typos!
Sunday, December 26, 2010
Today was a really hard day. I came to the hospital looking forward to a good day-Mom had the day off from radiation and had a list of things she wanted to do: 1) shower and shampoo (it's been almost a week!) 2) email work to let them know what's up and 3) email and call out of town and non-Jewish friends who were celebrating Christmas and don't know the situation. I found some awesome Aveda shampoo and conditioner samples and a luxurious face cream from home and was looking forward to "spa day" and helping her compose her message to friends and colleagues.
When we arrived at the hospital around 10am, she was just starting on breakfast. She had more of an appetite today and was eating strawberries and cream of wheat, and an English muffin with butter and blackberry jam. But she's having trouble swallowing, so after two bites of English muffin, she gave up on that. Her mouth got really dry and she was afraid to eat it. She ate a lot of strawberries (chopped up into little pieces) and some cream of wheat. She also ordered yogurt and had a few bites of that a few hours later.
The trouble swallowing is scary and we're not sure if it's a side effect of radiation (according to our guest oncologist) or due to the tumors surrounding her brain and potentially interfering with the amygdala (according to the hospitalist). When I say guest oncologist, I'm referring to the fact that it's Christmas and lots of the doctors are on vacation. We have an oncologist covering for the weekend who is really nice, but not her original doctor. Tomorrow we have a different guest oncologist. I totally understand that it's the holiday and that people are on vacation, but it is a bit frustrating to not have one doctor to take us through everything. But that's where the hospitalist comes in-she's been here since the beginning and is in charge of coordinating all the care. For example, in addition to the difficulty swallowing, Mom also experienced a pretty dramatic decrease in vision function. (Yesterday she was having double vision that was annoying, and which our fabulous nurse, C, fixed by making a makeshift eye patch with gauze and tape. But today, in addition to the double vision, her total vision was really bad. She can tell who everyone is, but can't focus on details, like which button on the call pad is the big red "summon the nurse" button. She also doesn't have any depth perception.) The hospitalist came by today and noted the decrease in visual function and said that we really needed to see a neurologist, but recommended that we wait until tomorrow instead of speaking with the one on call today.
The hospitalist also drafted a plan of action for tomorrow: consultation with the neurologist and an MRI on the middle and lower part of her spine, to help determine how much radiation they want to give her. The MRI that diagnosed the cancer in her upper spine, neck and head is what is determining her radiation course of treatment for the time being, but they may want to do her whole spine and before they set that up, the doctor wants to see what's going on with the rest of her spine, cancer-wise. The hospitalist also recommended that we speak with the oncologist tomorrow to determine the best time to start the chemotherapy.
Mom was very tired today-she never really got in a good time frame. When she went to the bathroom in the morning, her legs almost buckled as she stood up. I had to stand behind her, grab her around the middle with both hands and basically be her support structure as she held onto her IV pole to get back to the bed. She kept saying that she wanted a shower, but wasn't quite ready for it. By 5pm, my favorite nurse (C) was getting ready to leave and we decided it was now or never. I told C that I wanted to do it, and she helped mom to the shower, sat her on the chair there and let us do our thing. As soon as the warm water started running over her hair, Mom revived a bit. She kept saying how good it felt and really enjoyed herself. We washed up and then I gave her a shampoo. I started rubbing her head and she told me to really dig in. So I gave her a really strong head massage around her whole head, no gentleness, and she loved it. It took us 45 minutes, 12 towels, two washcloths and my soaking jeans, but it was definitely the highlight of the day. She felt much better afterwards, even rating her pain at a 2 after she got back into bed (with the amazing C's help, of course) and not being hooked up to her meds.
Our family rabbi and his wife came by tonight to say a few prayers and chat a little bit. As tired as Mom is, and as much pain as she's in, she is still totally lucid and in control of her treatment. She participates in all of the conversations, with both doctors and visitors. She still has a fierce sense of humor, teasing my dad and Gary, and is always checking up on outside situations.
Yesterday I told her how strong she was being, how much I admired her attitude and determination, how I was so impressed with her ability to keep her humor and be so wonderfully nice to everyone despite feeling awful. "It's easy to the be the patient," she said. "It's so much harder for everyone else."
Saturday, December 25, 2010
Mom was diagnosed with metastasized breast cancer on Wednesday, 12.22.10. She had been having severe head and neck pain for about a week and a half and spent a couple non consecutive days in the ER before being admitted to Overlake Hospital on Monday, 12.21 (ish-the days and dates are hazy for me). They ran several diagnostic tests before finally running the MRI of her head and neck on Wednesday that found the cancer. The cancer is in all of her cerebral-spinal fluid, but has not penetrated her brain. It is also in her sternum and maybe some other bones. The theory now is that it began as breast cancer and spread through the lymphatic system; two of her lymph nodes near the breast tested positive for malignancy.
As soon as she was admitted to the hospital, she got her pain managed and felt much better. She is 100% aware of everything that is going on, knows all of her doctors' and nurses' names and knows her diagnosis. She elected to begin radiation therapy on her head and neck-as far as I can tell, the benefits of the radiation are to stop the cancer from entering her brain and get it out of her head and neck. This should also reduce the pain within a week. The immediate side effects of the radiation are fatigue and sometimes a little naseau. She will also lose her hair permenantely.
Her doctor asked her on Thursday if she wanted to know her prognosis and she said no. I shouldn't be surprised that my mom is such a kick-ass fighter; though I've only spent one day with her in the hospital, she has impressed me so much with her determination and patience.
Gary and I arrived from NYC late Thursday night (12.23.10) and went straight the hospital where Mom was alert and cheerful. Friday, yesterday, was the first day of radiation and we were warned that it was going to be a rough day. She had to be "mapped"-the radiologists had to mark along her body where the radiation was going to be aimed. They also created a mask for the back of her head which is marked and she wears each treatment. Yesterday she spent about 2 hours in the radiology department having the mask made and having her body mapped. She had to lay on her belly twice for one hour at a time, which was really uncomfortable for her, but that was the longest she'll have to be in that position. After the treatment, she was uncomfortable for the rest of the night; she couldn't stay asleep for more than a few minutes at a time, she kept fidgeting and couldn't stay still, and kept pushing her pain medication pump. But when the nurse came in and asked her what her pain level was, she said a five. Such a trooper.
Today she had a great morning-she slept really well last night and had an appetite for breakfast. We arrived at the hospital around 9am and breakfast arrived about a half an hour later. She ate a few bites of french toast and a few bites of cream of wheat with strawberries, her biggest breakfast in a couple of weeks. She was energetic and lucid and joked with everyone. But pretty much right after breakfast, she started feeling a lot of pain again. The pain is in her head, neck and back. In addition to the pain medication, she has ice packs on her neck and back. We also put a pillow under her knees sometimes which helps her to be more comfortable.
Yesterday her big concern was that the second hole in her ear would close, so she asked me to bring a pair of earrings to keep in her ears. And today she put me in charge of grooming patrol-if an eyebrow or something gets out of control, I'm to take care of it. :-)
Tomorrow she doesn't have a radiation treatment, so I'm looking forward to a better day. She wants to go through all of her email, communicate with work and send an email to all of the friends and family who don't yet know what's going on. Ross, Claudia, Gary, Dad and I are all so appreciative of all of the love and support we've received so far; we've been so inudated with love, care and support. Please forgive us if we don't return phone calls or text messages right away~we're all rotating in and out of her room, talking with doctors and spending time with our many wonderful visitors. We so appreciate all the communication and will return calls, texts and emails as soon as we can.