Today I felt terrible, like I had a flu or a really terrible hangover. I haven't eaten all day, and sometimes struggle in sipping beverages to swallow my medications.
I am at the maximum dosage for anti-nausea meds. I really hope it stays under control all night. Also, my pain drugs seem to have been perfectly titrated. At least, pain hasn't been a tremendous problem today. Really, I have just been so exhausted that I doubt that I was up for 90 minutes straight at any point today. I am writing this with one eye closed so I can focus.
Also, in physical therapy today, I walked to the hallway and back to bed. I am supposed to come home tomorrow, but may need a blood transfusion first since my hemoglobin is already super low.
Total chemo count: 10
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Saturday, September 8, 2012
Friday, September 7, 2012
Pain free ish
Pain is under control! Yes, for the last few hours, I would say that I am not in pain. Coincidentally, I also have been sleeping on and off for the last few hours. I am drowsy and stretchy like a cat.
During chemo, my leg hurts extra. Last night, it hurt so much I couldn't sleep. Today, the docs changed my pain drugs again. I think that helped.
Tomorrow is my last day of chemo for this round. I may be switching to once a week. I might also have the option to have 4 in a row while hospitalized again. I actually forget if these are options or if we were waiting on something before deciding whether a slow down was ok.
I have been giving a lot of thought to the Ideal Hospital. I will write more about it later.
During chemo, my leg hurts extra. Last night, it hurt so much I couldn't sleep. Today, the docs changed my pain drugs again. I think that helped.
Tomorrow is my last day of chemo for this round. I may be switching to once a week. I might also have the option to have 4 in a row while hospitalized again. I actually forget if these are options or if we were waiting on something before deciding whether a slow down was ok.
I have been giving a lot of thought to the Ideal Hospital. I will write more about it later.
Thursday, September 6, 2012
Day 2 of sarcoma chemo
My leg hurts more during chemo, but less afterward. Today when I woke up, I noticed it wasn't burning hot, but felt like my healthy leg, temperature wise.
I slept decently last night, except for being woken to have my vitals checked at 4;30 am and having trouble returning to sleep. I switched to pajamas which are more comfy and less tangly than hospital gown. I slept for hours this afternoon during chemo. I am so exhausted that I imagine I will sleep fine tonight.
I don't have much to add. I am always tired. I am terrible on the phone. I have difficulty focusing and sometimes fall asleep during the conversation. Please text or email me instead. Or, if you need updates, ask my brothers or Ken or Marcy. I don't know what the cumulative effect of 4 days of chemo is, but day 2 felt extremely exhausting. I also seem to have "micro dreams" when I blink while talking to staff. I have limited who can come see me in the hospital in this wacky state. There will be plenty of time to visit when I get home.
I am excited to get better.
I slept decently last night, except for being woken to have my vitals checked at 4;30 am and having trouble returning to sleep. I switched to pajamas which are more comfy and less tangly than hospital gown. I slept for hours this afternoon during chemo. I am so exhausted that I imagine I will sleep fine tonight.
I don't have much to add. I am always tired. I am terrible on the phone. I have difficulty focusing and sometimes fall asleep during the conversation. Please text or email me instead. Or, if you need updates, ask my brothers or Ken or Marcy. I don't know what the cumulative effect of 4 days of chemo is, but day 2 felt extremely exhausting. I also seem to have "micro dreams" when I blink while talking to staff. I have limited who can come see me in the hospital in this wacky state. There will be plenty of time to visit when I get home.
I am excited to get better.
Tuesday, September 4, 2012
Too many needles
I have been having trouble sleeping at night in the hospital. Tonight, I asked for ambien to help me sleep. About an hour or so later, I was woken up to have my vitals measured. Turns out, I had a fever of 102. The aide told my nurse who contacted one of the residents on my case. She ordered the same tests from the day before: 2 sets of bottles filled with blood from 2 different sites (to prevent false positives) and another urine analysis.
I became upset as my nurse starts looking for my veins. She finds one and quickly fills the bottles. One set done, one more to go. The next vein is harder for her to find but eventually I feel the pinch of the needle. Then I feel the needle squirm and wiggle. I am having a hard time with these sensations and the nurse pulls out the needle. She finds a third spot on my arm and I feel the pinch of the needle. Then I feel the pressure from the nurse pushing the needle into the being. Blood isn't coming out. She calls another nurse who also has trouble getting blood. They pull out that needle. I ask for a break before continuing. The nurse tells me that they will have to do the testing with just one set of bottles. Yay! I am frustrated and upset, but at least I am not being stuck with more needles.
Needle count: 101!
This is depressing. I miss feeling better, being healthy.
I became upset as my nurse starts looking for my veins. She finds one and quickly fills the bottles. One set done, one more to go. The next vein is harder for her to find but eventually I feel the pinch of the needle. Then I feel the needle squirm and wiggle. I am having a hard time with these sensations and the nurse pulls out the needle. She finds a third spot on my arm and I feel the pinch of the needle. Then I feel the pressure from the nurse pushing the needle into the being. Blood isn't coming out. She calls another nurse who also has trouble getting blood. They pull out that needle. I ask for a break before continuing. The nurse tells me that they will have to do the testing with just one set of bottles. Yay! I am frustrated and upset, but at least I am not being stuck with more needles.
Needle count: 101!
This is depressing. I miss feeling better, being healthy.
Battle plan for destroying Sneaky
Dr Rubin, my oncologist, just came into my hospital room and explained her plan to me. I will be getting chemo in the hospital for 3 days straight to shrink Sneaky, the tumor in my leg. Then, we will continue on a more spaced apart way. We don't have a plan for total number of treatments. We are hoping to shrink it to oblivion, like we did with breast cancer. After chemo, we will likely have radiation and surgery, though that's not definite and may relate to how badly we destroy Sneaky.
At the end of that, I will be getting a dosage of Herceptin, a protein that inhibits the growth of the kind of breast cancer that I had. I am past due for Herceptin. I was supposed to get it last week, but was in the hospital.
I feel like I am entering this terrible battle for my life and my leg. I am assembling an army to help me. I have Dr. Rubin and Dr. Lackman directing and coordinating the attacks. I have my other doctors aiming the big guns and the nurses loading them up. I need other help from you.
If you pray, please pray that chemo destroys this sarcoma.
If you practice Reiki, please send some to me.
If you are an artist, create an image of Sneaky's demise.
If you are a musician, create a soundtrack for this epic battle.
If you can create an excellent guided imagery meditation to help me visualize the annihilation of Sneaky, please send it to me. Or come here, and guide me through it
in person.
If you are funny, make me laugh.
If you are a good listener, sit with me while I cry, but don't let me stay there long.
If you are good company, sit with me and remind me that it will be ok. Tell me about a time in the future when I forget how painful 2012 is.
If you have other magical healing gifts, please share them with me.
Needle Count: 97
I feel like we should celebrate when we get to 100!
At the end of that, I will be getting a dosage of Herceptin, a protein that inhibits the growth of the kind of breast cancer that I had. I am past due for Herceptin. I was supposed to get it last week, but was in the hospital.
I feel like I am entering this terrible battle for my life and my leg. I am assembling an army to help me. I have Dr. Rubin and Dr. Lackman directing and coordinating the attacks. I have my other doctors aiming the big guns and the nurses loading them up. I need other help from you.
If you pray, please pray that chemo destroys this sarcoma.
If you practice Reiki, please send some to me.
If you are an artist, create an image of Sneaky's demise.
If you are a musician, create a soundtrack for this epic battle.
If you can create an excellent guided imagery meditation to help me visualize the annihilation of Sneaky, please send it to me. Or come here, and guide me through it
in person.
If you are funny, make me laugh.
If you are a good listener, sit with me while I cry, but don't let me stay there long.
If you are good company, sit with me and remind me that it will be ok. Tell me about a time in the future when I forget how painful 2012 is.
If you have other magical healing gifts, please share them with me.
Needle Count: 97
I feel like we should celebrate when we get to 100!
Friday, August 31, 2012
Home, at last
I am back in my apartment tonight. Yay!
Around 1pm, my nurse said that I was going home today. She handed me discharge papers and left the room. I saw the my anti-anxiety drugs and sleeping pills were not on the drug list, so I called her back and explained the situation. Nurse V left and returned an hour later with a revised discharge form and printed out prescriptions. When she handed me the scripts, I asked her about the prescriptions for the 7 other drugs on my drug list. Nurse V shrugged and said I had to call my doctor.
I called Dr. Lackman's answering service and left a message explaining the situation. He called me immediately and suggested that he call in the drugs. As I listed the drugs, he sounded increasingly angry that someone had not done their job. Of course, he couldn't legally call in any of my pain drugs. He asked me to have my nurse call him and said he would work on it.
When I hung up, I was extremely upset. My stomach hurt and I had an explosive tearful jag. I asked my nurse about pain drugs; she said I was overdue for the long acting OxyContin, but it took her another hour before she gave it to me.
Within an hour, an orthopedic resident came up to my room from the Emergency Room explaining that Dr. Lackman had sent him to straighten out the situation. He returned to my room a few minutes later with a stack of prescriptions. Apparently, they just needed to be printed out. I called the nurse coordinator and the patient-staff liaison to complain about the problems in getting discharged.
I finally left the hospital, about 6 hours after I was initially told I could. Jimmy drove me home in his pick-up truck. Ken met us at my place and they carried me upstairs in the wheelchair. Emily came over to help me calm down, while Jimmy and Ken got my prescriptions filled.
Overall, it was an exhausting day. I am glad I am home.
Needle Count:86
Around 1pm, my nurse said that I was going home today. She handed me discharge papers and left the room. I saw the my anti-anxiety drugs and sleeping pills were not on the drug list, so I called her back and explained the situation. Nurse V left and returned an hour later with a revised discharge form and printed out prescriptions. When she handed me the scripts, I asked her about the prescriptions for the 7 other drugs on my drug list. Nurse V shrugged and said I had to call my doctor.
I called Dr. Lackman's answering service and left a message explaining the situation. He called me immediately and suggested that he call in the drugs. As I listed the drugs, he sounded increasingly angry that someone had not done their job. Of course, he couldn't legally call in any of my pain drugs. He asked me to have my nurse call him and said he would work on it.
When I hung up, I was extremely upset. My stomach hurt and I had an explosive tearful jag. I asked my nurse about pain drugs; she said I was overdue for the long acting OxyContin, but it took her another hour before she gave it to me.
Within an hour, an orthopedic resident came up to my room from the Emergency Room explaining that Dr. Lackman had sent him to straighten out the situation. He returned to my room a few minutes later with a stack of prescriptions. Apparently, they just needed to be printed out. I called the nurse coordinator and the patient-staff liaison to complain about the problems in getting discharged.
I finally left the hospital, about 6 hours after I was initially told I could. Jimmy drove me home in his pick-up truck. Ken met us at my place and they carried me upstairs in the wheelchair. Emily came over to help me calm down, while Jimmy and Ken got my prescriptions filled.
Overall, it was an exhausting day. I am glad I am home.
Needle Count:86
Wednesday, August 29, 2012
Answers to frequent ?s
Answers to the most frequently asked questions:
- No, I am not sure when I am leaving the hospital, but we are just waiting to stabilize drugs. I am no longer on any IV medications.
- No, we do not have a start date for chemo. We also don't have a definite list of chemo drugs or know frequency or duration of chemo. My oncologist is on vacation. I would guess that my treatment will wait for her return, but it may not.
- I have not had genetic testing yet. It is not urgent, but we are definitely doing it.
Needle Count: 84
Calming down
I had a tough night through early afternoon. I seemed to burst into tears at the smallest gesture. I felt angry at the tiniest provocation. I felt like I was snapping at my brother and at friends. Then, my gorgeous friend Elizabeth visited with me and calmed me down sort of by absorbing all of my energies. I have felt so much better since.
I have used my walker to get myself to and from the bathroom. Twice! The second time I was completely fatigued; it was like I had run up 2 or 3 flights of stairs. The nurse said it was ok because I could make conversation while I caught my breath. I felt proud for using the walker, but shocked at my weakness. I will be stronger. Every day I will have more endurance.
This evening, Dr. Thomas (who coordinates my treatment team) suggested that I use my brand new wheelchair to leave my hospital room. My brother brought me to the Contemplative Garden. I loved being outside, smelling lavender and lilacs, listening to water flowing over a stone wall. I felt calm and peaceful.
I also started the Lovanox, a needle I get twice a day in my belly to thin my blood.
Needle Count: 82
Tuesday, August 28, 2012
Plans
I will be starting chemo soon to shrink Sneaky the Sarcoma and the nodules in my lungs. Yes, biopsy results came back and preliminary findings say that the nodules are sarcoma.
The doctors would like to release me but are concerned about my living alone. My baby brother is staying at my house until next weekend. The rehab team is giving me a wheelchair to get around and will schedule s nurse visit every few days. After Jimmy leaves, someone else may come or I may stay at Ken's or Marcy's.
It is hard to process feeling of cancer spreading to my lungs while seriously considering how I will live. Doc strongly suggests that I assume I will not be able to walk for another 6 months. Bleh!
I am exhausted; painkillers and sleeping pills are kicking in.
The doctors would like to release me but are concerned about my living alone. My baby brother is staying at my house until next weekend. The rehab team is giving me a wheelchair to get around and will schedule s nurse visit every few days. After Jimmy leaves, someone else may come or I may stay at Ken's or Marcy's.
It is hard to process feeling of cancer spreading to my lungs while seriously considering how I will live. Doc strongly suggests that I assume I will not be able to walk for another 6 months. Bleh!
I am exhausted; painkillers and sleeping pills are kicking in.
Needle Count: 80
Monday, August 27, 2012
Waiting
No, I still haven't heard about the results of the lung biopsy.
I know you are curious. Me, too.
Promise I will share when there is a plan!
Sunday, August 26, 2012
Visitor Fatigue
My dear friends Janet and Jon visited me from Pittsburgh. It was fantastic to see them and catch up. Janet is a music therapist and I enjoy hearing her discuss her sessions with children on the autistic spectrum. About an hour after they arrived, my parents joined us, talking of Bunky's attempts at cuddles last night. A few hours later, I was pleasantly surprised to see my friends Liberty and Monica. We were a little short on chairs, but I enjoyed how everyone was getting along with each other, telling hilarious stories to get me to laugh.
After dinner, Ken arrived, also. I was so exhausted that the nurses were concerned, but everyone, besides Ken left. Honestly, I felt a little bad about not continuing to visit with my parents, but they insisted on heading out. I fell asleep fitfully after all the goodbyes, even though it was barely 7pm. I soon got some good rest.
One of my pain medications somehow makes me perceive sound as louder; I sometimes have trouble following conversation over the sound of my chewing. During these points of hypersensitivity, I tend to find loud voices painful or overwhelming. I also tend to take everything super literally, ver concretely and seem baffled by conversation that no one else finds confusing.
Please check-in with me before visiting. I sometimes meet with doctors, have tests (or recovery from tests), am in "extra" pain, or am already expecting visitors. I also struggle with sleep and have had ongoing nightmares, which can make me nappish all day. I genuinely enjoy connecting with friends and family. I feel so grateful that folks want to share their time with me. On the other hand, 7+ hours of visiting (and 7 visitors) might be too much for me. I can sleep if I have 1 or 2 visitors, but I get too excited about connecting with folks if there are more.
I had so much fun today. Thank you to everyone who visited today, during this hospitalization, and during other hospitalizations. Thank you to everyone who visited after the surgeries, after chemotherapy sessions, and days of testing.
After dinner, Ken arrived, also. I was so exhausted that the nurses were concerned, but everyone, besides Ken left. Honestly, I felt a little bad about not continuing to visit with my parents, but they insisted on heading out. I fell asleep fitfully after all the goodbyes, even though it was barely 7pm. I soon got some good rest.
One of my pain medications somehow makes me perceive sound as louder; I sometimes have trouble following conversation over the sound of my chewing. During these points of hypersensitivity, I tend to find loud voices painful or overwhelming. I also tend to take everything super literally, ver concretely and seem baffled by conversation that no one else finds confusing.
Please check-in with me before visiting. I sometimes meet with doctors, have tests (or recovery from tests), am in "extra" pain, or am already expecting visitors. I also struggle with sleep and have had ongoing nightmares, which can make me nappish all day. I genuinely enjoy connecting with friends and family. I feel so grateful that folks want to share their time with me. On the other hand, 7+ hours of visiting (and 7 visitors) might be too much for me. I can sleep if I have 1 or 2 visitors, but I get too excited about connecting with folks if there are more.
I had so much fun today. Thank you to everyone who visited today, during this hospitalization, and during other hospitalizations. Thank you to everyone who visited after the surgeries, after chemotherapy sessions, and days of testing.
Friday, August 24, 2012
I love it when a plan comes together.
Today was Good.
Today was fun.
Tomorrow is another one. Dr. Seuss
Maybe my day wasn't that fun, but sometimes I like to exaggerate. I got another sponge bath! My grandmother's sisters (and family matriarchs) visited with me for hours. My parents also drove down for the weekend and are staying in my apartment. It feels a little weird that they are there, but I am glad to see them.
Also, I had several meetings with doctors today, including Dr. Lackman, twice. We are waiting on results from the lung biopsy, but have some vague plans for possible chemo, surgery, and radiation. He said Sneaky (my nickname for the sarcoma) is a (UPS) Undifferentiated Pleomorphic Sarcoma. It's wacky "undifferentiated" nature confused doctors about whether it was synovial or muscle in origin and possibly complicated diagnosis, it acted "cyst-y" and not "cancer-y". Dr. Lackman emphasized getting my knee straight, too.
I came up with a knee straightening idea, based on mirror therapy in phantom limbb pain. When a person loses a limb, he or she may experience pain, cramping, etc. in that area even though the limb is missing because the associated parts of the brain are still functioning "as though" the limb was in place. The amputee places a mirror to see the reflected healthy limb in the location of the missing limb. The person exercises, stretches the healthy limb and the parts of the brain associated with the amputation are stimulated through the visual system. I might not be explaining it well, but there's some great YouTube videos on it.
Anyway, my theory is that since my leg has been stuck for a while, maybe the nerves associated with that area are a little confused about what should be happening. Maybe my Strong Right Leg and my Amazing Visual System can tutor the motor and sensation brain parts associated with my left leg. Besides, it really can't hurt.
Today was fun.
Tomorrow is another one. Dr. Seuss
Maybe my day wasn't that fun, but sometimes I like to exaggerate. I got another sponge bath! My grandmother's sisters (and family matriarchs) visited with me for hours. My parents also drove down for the weekend and are staying in my apartment. It feels a little weird that they are there, but I am glad to see them.
Also, I had several meetings with doctors today, including Dr. Lackman, twice. We are waiting on results from the lung biopsy, but have some vague plans for possible chemo, surgery, and radiation. He said Sneaky (my nickname for the sarcoma) is a (UPS) Undifferentiated Pleomorphic Sarcoma. It's wacky "undifferentiated" nature confused doctors about whether it was synovial or muscle in origin and possibly complicated diagnosis, it acted "cyst-y" and not "cancer-y". Dr. Lackman emphasized getting my knee straight, too.
I came up with a knee straightening idea, based on mirror therapy in phantom limbb pain. When a person loses a limb, he or she may experience pain, cramping, etc. in that area even though the limb is missing because the associated parts of the brain are still functioning "as though" the limb was in place. The amputee places a mirror to see the reflected healthy limb in the location of the missing limb. The person exercises, stretches the healthy limb and the parts of the brain associated with the amputation are stimulated through the visual system. I might not be explaining it well, but there's some great YouTube videos on it.
Anyway, my theory is that since my leg has been stuck for a while, maybe the nerves associated with that area are a little confused about what should be happening. Maybe my Strong Right Leg and my Amazing Visual System can tutor the motor and sensation brain parts associated with my left leg. Besides, it really can't hurt.
Thursday, August 23, 2012
Most relaxing day in weeks? Months?
I spent today re-reading my journal, watching bad television and feeling luxuriously relaxed. Besides an orthopedic resident who saw me around midnight, I have not seen any doctors nor had any tests. My body is in less pain than it has been since I was admitted to the hospital on Friday. Yay! I think it's because I haven't had to move too much. My nurses are very attentive and quick when I need support. Rounds are at 6 am and I will meet my team then.
My parents are coming to visit this weekend. Other folks have shared that they'd like to come, too. If you want to visit, that's great! Please check in with me first so that I don't overwhelm or exhaust myself and to make sure I am not in testing.
Love to everyone. Hooray for the doctors who figured out my pain drug regimen. It is easier for me to be hopeful when I am clean, in fresh clothes, pain free, and relaxed.
My parents are coming to visit this weekend. Other folks have shared that they'd like to come, too. If you want to visit, that's great! Please check in with me first so that I don't overwhelm or exhaust myself and to make sure I am not in testing.
Love to everyone. Hooray for the doctors who figured out my pain drug regimen. It is easier for me to be hopeful when I am clean, in fresh clothes, pain free, and relaxed.
Wednesday, August 22, 2012
My, what a busy day!
This morning, two members of the physical therapy team assessed me at 6:45am. After that, I had a fairly constant stream of visitors for the next 5 hours. The nurse gave me a strong painkiller. Each member of my medical oncology team spoke with me individually about transferring to Cooper University Hospital for treatment by the renowned Dr. Lackman. The hospital chaplain visited with me for an hour; we had a lovely conversation about hope and joy. He reminded me of grandpa and I reminded him of his younger sister. Meanwhile, the nurses and nursing aides continued to check on me. The medical oncology team visited together and announced (again) that I would definitely be transferred to Cooper University Hospital (3 miles away in lovely Camden) and that Dr. Lackman had committed to treating me. Yay! The nurse set about the process of transferring me.
I had not eaten or drank anything since Midnight Tuesday in preparation for the lung biopsy. Transportation got me to the CT area around 1:30; waiting for the biopsy team was my first break from everyone. It was blissful! Hospitals are terrible places to rest. I cheerfully recognized one particularly calming nurse on the team from the last time the cyst was drained. Apparently they gave me a lot of sedatives, because I don't recall too much until I got back to my room. Athena, Susan (family counselor), Rachel & 2 year old Elsa, Monica, and Elizabeth visited with me as I devoured my lunch. I also had another flower bouquet. Yay!
The rest of the day consisted of telling other people the transfer plans and waiting for a clean room at Cooper. My cousins Dino and James and Ken entertained me with stories as we waited for the ambulance. Ken trailed the ambulance to help me settle into my room while everyone else headed home. At Cooper, I have my own room and it has windows, lots more chairs, a big tv in front of the bed (instead of a tiny one slightly behind it). I think I am going to like it here.
Needle Count: 78
I had not eaten or drank anything since Midnight Tuesday in preparation for the lung biopsy. Transportation got me to the CT area around 1:30; waiting for the biopsy team was my first break from everyone. It was blissful! Hospitals are terrible places to rest. I cheerfully recognized one particularly calming nurse on the team from the last time the cyst was drained. Apparently they gave me a lot of sedatives, because I don't recall too much until I got back to my room. Athena, Susan (family counselor), Rachel & 2 year old Elsa, Monica, and Elizabeth visited with me as I devoured my lunch. I also had another flower bouquet. Yay!
The rest of the day consisted of telling other people the transfer plans and waiting for a clean room at Cooper. My cousins Dino and James and Ken entertained me with stories as we waited for the ambulance. Ken trailed the ambulance to help me settle into my room while everyone else headed home. At Cooper, I have my own room and it has windows, lots more chairs, a big tv in front of the bed (instead of a tiny one slightly behind it). I think I am going to like it here.
Needle Count: 78
Tuesday, August 21, 2012
Good news & bad news
I have to keep this brief for the pain, etc.
Good news:
Bad news:
- my brain is fine! There were no problems with the brain MRI.
- Lung nodules look the same from a month ago.
- The orthopedic oncologist I am scheduled to see is world renowned.
- Doctors are increasing painkillers
Current plan:
- The sarcoma in my leg is so large that it isn't clear from MRI where it ends.
- I will be in hospital at least till Friday, possibly getting admitted to Cooper Hospital in NJ.
- I have a fever.
- I am in pain.
- The ct scan of my lungs was really tough. The dye IV burst and got stuck all over my hand.
- I lost 10 lbs since the beginning of August. I am having a very tough time eating, because of pain, drugs, and unappealing food.
If you want to "do something":
- Continue pain management
- Go to radiation set up tomorrow
- Take an ambulance to ortho onc in nj on Friday.
I appreciate visitors and texts. Phone calls are trickier if I am out of it or busy with hospital people.
- Bring On the funny & distracting.
- Research orthopedic oncologists, particularly related to insurance, if possible.
- Come visit, or someone can work out a schedule for visits.
- Check in, support my caregivers, especially Athena, Ken, my parents and siblings.
Needle count: 77
Monday, August 20, 2012
Current plan
I am on a lot of morphine now to control pain.
I will have an MRI on my knee to discern sarcoma and blood clot. Because last time ended with my hysterics. The doctor agreed to give me more morphine before the test. They are also going to MRI my brain to rule out cancer there and to explore nerve stuff, since my nerves are being weird.
I am still scheduled for radiation on Wednesday, Chemo on Thursday, and the ortho-oncogist Friday.
Please keep sending me good thoughts and energy.
I will have an MRI on my knee to discern sarcoma and blood clot. Because last time ended with my hysterics. The doctor agreed to give me more morphine before the test. They are also going to MRI my brain to rule out cancer there and to explore nerve stuff, since my nerves are being weird.
I am still scheduled for radiation on Wednesday, Chemo on Thursday, and the ortho-oncogist Friday.
Please keep sending me good thoughts and energy.
Sunday, August 19, 2012
Blood clot.
On Friday, Athena took me to Methodist Hospital to get an ultrasound of my legs to determine whether I had a blood clot. We got to the appointment at around 9:30 am. Sure enough, there was a blood clot. The ultrasound people sent me to the ER where they eventually gave me Percoset. The ER doctor recommended to go to Hahnemann Hospital, as that was where all my doctors were associated. We rode over in an ambulance around 5:30pm: a horribly long, famish-y, painful day in the ER
I was admitted and had to repeat the ultrasound. I was in a lot of pain and have been very sad about the news of the sarcoma. Luckily, I had people who love me come visit. My parents, Ken, Emily and Kevin, and Monica all helped me by just being there.
Last night, I barely slept due to pain, despite Percoset and morphine alternating every 2 hours. I cried a lot and talked to my genius doctor cousin Stephanie who suggested getting a patch. I have also been given a PCA of morphine where I can press a button to get more.
At the moment, I am feeling 87%better Thani did this morning. I am still in pain, but I have hope now that I won't always be in pain.
Needle Count: 75.
I was admitted and had to repeat the ultrasound. I was in a lot of pain and have been very sad about the news of the sarcoma. Luckily, I had people who love me come visit. My parents, Ken, Emily and Kevin, and Monica all helped me by just being there.
Last night, I barely slept due to pain, despite Percoset and morphine alternating every 2 hours. I cried a lot and talked to my genius doctor cousin Stephanie who suggested getting a patch. I have also been given a PCA of morphine where I can press a button to get more.
At the moment, I am feeling 87%better Thani did this morning. I am still in pain, but I have hope now that I won't always be in pain.
Needle Count: 75.
Thursday, August 9, 2012
Home again!
Yesterday, I got to leave the hospital with Athena and go to my south Philly apartment. I had done well in Pt: I walked down the hallway, up and down a flight of stairs (with a cane) and back to my room. Then, the PT got crutches, and I did the same thing again, only I didn't go as far up the steps. It was awesome, especially given that I had difficulty walking to the hallway and back in my first PT a few days before.
Lumpy 2 was full of necrotic fat cells, cell debris, and blood clots. Eew! In the hospital I got 2 shots of blood thinners in my belly every day, to help prevent further blood clots. At home, I have to take aspirin twice a day.
I had an appointment at radiation oncology yesterday morning,also. Because that department is in the first floor of the same hospital, I thought someone could just give me a wheelchair to help me go. Apparently, that's not how it worked at all. My Radiationn Oncologist came up to my hospital room. She and another doctor explained that my initial appointment would be 8/ 23 and that daily radiation would start a week later and last for 6 or 7 weeks. Dr K said she had consulted with my oncologist and they would like me to get the nodules in my lung biopsied as soon as possible.
Lumpy 2 was full of necrotic fat cells, cell debris, and blood clots. Eew! In the hospital I got 2 shots of blood thinners in my belly every day, to help prevent further blood clots. At home, I have to take aspirin twice a day.
I had an appointment at radiation oncology yesterday morning,also. Because that department is in the first floor of the same hospital, I thought someone could just give me a wheelchair to help me go. Apparently, that's not how it worked at all. My Radiationn Oncologist came up to my hospital room. She and another doctor explained that my initial appointment would be 8/ 23 and that daily radiation would start a week later and last for 6 or 7 weeks. Dr K said she had consulted with my oncologist and they would like me to get the nodules in my lung biopsied as soon as possible.
Sunday, August 5, 2012
Day 2 in the hospital
Today I have been sleeping on and off all day. Like yesterday, I would fall asleep when I closed my eyes, but sometimes only for a few minutes. Last night, I had tremendous scary dreams, mostly about being stuck somewhere, because my legs wouldn't move.
This afternoon, they cut off the morphine supply and restarted me on Percocet. As long as I have something, I am good. I had physical therapy and occupational therapy come help me today. I used a walker to get from my bed to the hallway. I got dizzy, so we stopped. They helped me use the bathroom too before they left.they want me to be able to climb stairs and walk further before I leave.
I have also been running a fever (up to 102.1) today. It didn't respond to Tylenol, at first, so I had to get a chest X-ray. It came down when we switched to Percocet, which has tylenol in it. I have less sensation in my foot than before surgery. Doc says it may be due to inflammation from surgery.
The orthopedic team just examined me (at 3:45am!) and said that the ace bandage wrap from my thigh to my toes would stay there until my follow up with junkin. They gave me additional exercises to help stretch and strengthen my leg.
Needle count 69 (1 shot of heparin & 1 shot for a blood culture)
This afternoon, they cut off the morphine supply and restarted me on Percocet. As long as I have something, I am good. I had physical therapy and occupational therapy come help me today. I used a walker to get from my bed to the hallway. I got dizzy, so we stopped. They helped me use the bathroom too before they left.they want me to be able to climb stairs and walk further before I leave.
I have also been running a fever (up to 102.1) today. It didn't respond to Tylenol, at first, so I had to get a chest X-ray. It came down when we switched to Percocet, which has tylenol in it. I have less sensation in my foot than before surgery. Doc says it may be due to inflammation from surgery.
The orthopedic team just examined me (at 3:45am!) and said that the ace bandage wrap from my thigh to my toes would stay there until my follow up with junkin. They gave me additional exercises to help stretch and strengthen my leg.
Needle count 69 (1 shot of heparin & 1 shot for a blood culture)
Saturday, August 4, 2012
Lumpy 2 surgery
I had surgery removing the Baker's Cyst yesterday. Dr. Junkin said that it was very big and was wrapped around a nerve and pushing against another nerve. He said that when he opened the area up, the cyst burst and he cleaned out 200 ccs of fluid and detritus hat accumulated there.
My leg is straight for the first time in weeks. I have been sleeping on and off since surgery ended due o the morphine.
NEedle count: 67 (1 IV and 1 heparin & 1 blood culture)
My leg is straight for the first time in weeks. I have been sleeping on and off since surgery ended due o the morphine.
NEedle count: 67 (1 IV and 1 heparin & 1 blood culture)
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