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.

1st nursing visit

Today, Janet, one of the nurses from Holy Redeemer came to visit and to check on my transition home. We reviewed my medications. I felt anxious and upset as soon as she sat with me on the couch. I cried intermittantly throughout her visit while reassured me and calmed me down.

She also observed me in giving myself the Lovanox injection. I started to hyperventilate, but she helped me calm down. I have so much panic about the needle that i may have to switch to coumadin, as it is just pills. I am not upset about the pain, but the needle itselfDuring her visit, my parents also arrived. I felt calmer then, too.

I asked my parents and brother to split some hoagies with me. It was the best meal I had had in the last few weeks.

I found out my bank account has $40 in it; I haven't received the 75% paycheck from work. I have to get this fixed. I cannot function like this. My parents kindly offered to help me with a loan.


Needle Count: 88

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

Answers to frequent ?s

Answers to the most frequently asked questions:

1. 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.
2. 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.
3. I have not had genetic testing yet. It is not urgent, but we are definitely doing it.

Needle Count: 84

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.

Location:Dr Martin Luther King Blvd,Camden,United States

Needle Count: 80

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

Good news & bad news

I have to keep this brief for the pain, etc.

Good 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

Bad news:

•  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.

Current plan:

• Continue pain management

• Go to radiation set up tomorrow

• Take an ambulance to ortho onc in nj on Friday.

If you want to "do  something":

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

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.

Cancer 3, Chemo #1

I am lounging with my sister following chemo today. I was in treatment from around 10:30 am until around 3pm.  I got very tired, but I had trouble resting because my leg hurt too much.

I have spent most of the last 24 hours crying on and off about this new experience and the return to chemo. The other parts of the day were spent staring off into space.

I don't have energy to share more.

Needle Count: 73

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)

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)

Surgery tomorrow

Marcy drove me to the Oncology office and I got my herceptin IV today and a shot of Lupron. Dr. Rubin said that things looked good on the CT scan and bone scan, except for 1 thing in the report. I am going to have Marcy get the cd of the images and bring it to her tomorrow, so that we will know more about how important this thing is.

Surgery is Friday (tomorrow) morning. I may be overnight at the hospital. Wish me luck!

Touch count: 22
Needle count: 64

appointment-hell-day redux

Last night, I slept over my friend Marcy's beautiful house in Mt Airy. We got up early and she drove me to Hahnemann hospital for doctor-appointment-hell-day. She asked the security guard to order us a wheelchair and I took the elevator upstairs to wait for my appointment.

Dr. Junkin examined my leg again and said that the pathology report showed no signs of infection. He said that he was planning to excise the cyst on Friday. He said that I'd probably be overnight or admitted for 23 hours (an insurance thing) following surgery. He also said that the scar would be big because the cyst is so gigantic. Dr. Junkin suggested that it'd be a 2 - 4 week recovery time and said that I probably wouldn't need physical therapy, since my normal movements would probably be "enough" to strengthen the muscles again. He also said that I would be in a knee immobilizer to keep my knee straight for a few weeks. I think it is kind of funny that I haven't been able to straighten my knee for so long and now I won't be able to bend it either.

Dr. Junkin added that I'd use crutches or a walker (if the crutches irritated the scar from the sentinel node biopsy). He seemed to think I'd be put off by the walker. This year has been a sort of timewarp for me: I've lost my hair, entered menopause, walk stooped with a cane, and spend more time resting on the couch than socializing. Using a walker wouldn't be worse than any of that.

After that appointment, Marcy and I got some food in the cafeteria and ran into Maureen, the art therapist. We chatted until my next appointment, for pre-surgery screening. I answered the same 100 questions that I always do and gave a urine sample to prove once again that I'm not pregnant. The nurse got a needle to get some blood. I got a little nervous, but she had no trouble getting a vein. Yay!

We left that appointment with enough time to get a quick cup of tea and snack before my next appointment across the street. Dr Lind, my surgeon, examined my breast and said that it looked like it was healing beautifully. He pulled off the surgi-tape that was left, which left a bigger scar than I imagined. He said that it was still swollen, but would be fine in a few more weeks. Dr. Lind also examined my leg and noted the areas of numbness and swelling. He said that he's "never seen anything like that in 25 years of practice". That's not reassuring. Dr. Lind promised he'd check on me after surgery. That's very reassuring. I love that man.

After all of these appointments, Marcy brought me home and I rested. I can't take ibuprofen before surgery and I don't have any tylenol here, so my only painkilling options are Vicodin and Percoset. Mostly, I'm going to be resting and sleeping for a few hours at a time until tomorrow's appointment at noon.

needle count: 62
touch count: 21

Knee drain today

I am just getting home from the hospital where the doctors aspirated 110ccs of fluid from my knee. That makes 280ccs total. When I have more energy, I will try to find an equivalent. The doctor sent the fluid to pathology to check for infection and possible malignancy.

Today, I am calling docs to coordinate the surgery to remove the knee cyst.

Needle count: 61 (Today I had 1 Lidocaine shot and 1 needle to aspirate.)
Touch count: 20

ct scan and mri

I hobbled to my primary care doctor's office to get a referral for the MRI today and met my friend Amy at the coffeeshop across the street from his office. Amy drove me to Methodist Hospital for the tests. She pulled up in the back and grabbed me a wheelchair.

My first test was the MRI. It was in the trailer outside the building; I'd never had an MRI at that one before. I explained my knee's lack of mobility to the technician and we tried to find an acceptable position for me to be in during the exam. After the first few minutes, my leg started to throb. It got worse and tears started to come to my eyes. I pressed the "emergency" button to ask how much longer. I thought it was maybe halfway through the test, not 5 minutes into it. The technician said to try to stay in the test. I did try, but a few minutes later, my foot started to get hot. Really hot. Like it was burning. The searing sensation lapped up my leg and I became hysterical. I cried so hard that the technician stopped the test. I think he lifted off the apparatus on my knee and carried me off the machine into the wheelchair before I calmed down. I felt terribly embarrassed and my leg hurt (though the burning stopped after the apparatus came off). The technician wheeled me out of the trailer and up to the 2nd floor of the hospital. He even got me crackers and juice, as my lack of eating (because of the tests) probably contributed to the hysteria.

When I got upstairs and registered for the second test, a nurse brought me a fairly bad-tasting milkshake to drink to coat my insides so that they'd show up on the CT scan. Then she brought me back to a room to start an IV. I told her that during surgery it took 9 tries to get the anesthesia needle in; she said that she wouldn't even try and called for a nurse to hook up my IV with an ultrasound. It took her 20 minutes, a shot of Lidocaine (to numb me), and lots of warm blankets (to help get the blood flowing) to get a vein in my upper arm. The needle left a giant ugly bruise, but it cheerfully only took her one try. The scan itself only took a few minutes. Afterwards, my friend Tony picked me up. We got lunch before he brought me home.

Needle count: 59
Touch count: 20

Surgery

Surgery was yesterday. Ken brought me to the hospital around 8am to check in. My parents met us in the pre- procedure room. After answering the same questions a dozen times and changing into a hospital gown, the transportation crew took me to Nuclear Medicine.

The doctor there explained that he was going to inject my breast 4 times with a radioactive material and photograph it using a gamma ray machine (which looked remarkably like the bone scan machine from Wednesday). I felt anxious about the needles and tried deep breathing and imaging myself in lovely environments to relax myself, but the injections HURT. The initial injection felt like an intense insect bite, but the saline-radioactive material stung and burned. I could not help crying. After the injections, the platform I was on slid into the machine; the camera part moved to just above my face. I laid like that for 45 minutes of imagery. My family came in totallwith me.

From there,I was wheeled to the pre/post -operation area. I told a bunch of doctors and nurses my name, birthdate, and therocedures that I was having. The anesthesia people came in to set up an IV. The resident blew a vein on his first try (2 needles) and the doctor took over. He grid several times on my right foot. I yelped. My surgeon came over to reassure me. The resident let me squeeze his hands to handle the pain of the injections. After a few tries, they wheeled me into surgery. The anesthesiologist gassed me to put the IV.

The next thing I knew, I was back in the pre/post operation area. My leg was throbbing so badly that I couldn't lay still. The anesthesiologist injected something into my IV and I fell back to sleep for another hour or so. When I woke up again, myleg throbbed so badly I couldn't get comfortable. My friend, the art therapist, visited me for a while.

The nurses sent me back to the procedure admissions to be discharged. My parents and Ken were there. I was in a lot of pain. My breast and underarm were feeling sharp and achy, while my body was not tolerating having my leg pressed against anything. Within the longest hour ever, the nurse brought me 2 percosets. Then she and my mother helped me get dressed.

We left the hospital around 7pm. Mom packed up some clothes and Ken brought my favorite technologies. Then we drove 2 1/2 hours to my parents' house. The ride was painful. Every bump made me yelp and whimper.

I had trouble sleeping because my leg was in too much pain. I woke up every time it touched any surface.

Needle count:57 (44 + 4 (for imaging) + 9 (for the IV)
Touch count: 20

bone scan

Today, I had a bone scan at Methodist Hospital. My friend Dan drove me the 4 blocks to the hospital. We got there around 9 am and got up the the Nuclear Medicine Department within an hour. The technician brought out a metal canister that held the hypodermic needle in it. She gave me the shot in my right arm, then said that I could return in 3 hours. Another technician helped me into a wheelchair and drove me downstairs and outside to Dan's car.

Dan and I got breakfast at Oregon Diner and chitchatted about non-cancer topics. yay!

We stopped by the Post Office. I got a lovely package from my friend Kaja. It had a fantastic book of letters and a banner in it. Then we headed back to the hospital for the scan itself. Dan grabbed me a wheelchair and brought me up to the floor as we got to the hospital so that I wouldn't have to walk at all.

For the scan, the technicians strapped me to a platform that slid into a ring-shaped structure. It wasn't as enclosed as an MRI. It sat just a few inches in front of my face for a few minutes and then moved slowly down my body. I mostly rested with my eyes closed and imagined relaxing on beaches. The process took about 20 minutes. Then they re-oriented the machine twice and specifically scanned my hips, as bone loss typically shows up there first.

Afterwards, the technician drove my wheelchair out to the bus stop and I headed to work.

Surgery is in 3 more days. I am a little nervous, mostly about the immobility of my leg and the probable immobility of my arm, too. I'm also a little nervous about the biopsies, but there isn't anything to do about that now.




Needle count: 44
Touch count: 18

Surgery is scheduled

Yesterday, I met with my surgeon very briefly. He scheduled my lumpectomy for next Friday. Lumpectomy stills sounds like a made up word.

Today, I saw my oncologist. I got a bag of herceptin which took about an hour. I will be getting this $5000 shot every 3 weeks until February. I also got a shot (in my butt) of lupron, which shuts down my ovaries. Blegh. The doctor added that the raised itchy bumps were probably mosquito and that I might be extra attractive to them and/ or extra allergic to them, courtesy of chemo. Chemo's so full of so many surprises.

Also, in case you were curious, I walk like a little old lady with a cane and support hose. I make friends with the grandmas while waiting for buses. It is possible that the last aspiration will make my knee all better, but it isn't statistically likely. I asked my surgeon for physical therapy, as I can't straighten my knee, but my oncologist thinks that no one would work with me because the cyst is still there. Meanwhile, I hobble and rest every half block and take Percocet to sleep or put my foot up.


Today's appointment took so long that I didn't go to work. I was in the office from 11 am to 4pm.

Needle count: 43
Touch count: 18

Lumpy 2 update

I haven't really had Internet access recently. My upstairs neighbor moved out, taking wireless with her. I ordered it, but it looks like my phone lines don't work. I don't know how to solve this. Also, I am on a ton of painkillers. That's probably why I can't figure it out.

Wednesday, I went to the hospital for my knee because it had been so bad Monday and Tuesday that's couldnt sleep. As i stepped into the building, people who were waiting asked the guard for a wheelchair for me. The doctor wouldn't see me because my referral had not been completed. I waited in the lobby, half slumped and half awake. My friend joined me and we headed up (different floor) for an MRI of my breasts. There was no visible cancer. Yay! I still got a shot (for contrast dye) and had a hard time holding still for the pain in my back, hips, bones, and my left leg.

Thursday, I went back to the hospital with a friend to see dr junkin, the orthopedic dr who had aspirated my knee in hospital. He gave me a shot of lidocaine and tried to aspiratemy knee, but nothing came. He sent me for an ultrasound guided aspiration on Friday.

Friday, Ken dropped me off at the hospital and I requested a wheelchair immediately. Iwas transported to the procedures area. I was in a ton of pain. The seat of the wheelchair seemed to press to hardon my body. I couldn't get comfortable. The nurse said that I could take Percocet. I did and started to relax. The doctor aspirated 90 something cc's of fluid, about 3 ounces. Afterward, I took a nap, thanks to the pressure relief and the painkillers.

Today, I can still barely walk. I am about where I was Monday, in terms
of pain and mobility. I am very frustrated and a little nervous about how swollen my foot is. I feel bored and isolated from everyone. I would love some cheer up phone calls or messages.

Needle count: 41
(it was 34, 1 for MRI, 2 for Thursday, and 4 for Friday.)

Lumpy 2: the end

After meeting with vascular surgeons, I met with the orthopedic team, starting around 2 am. The doctors examined my knee several times and decided to aspirated the cyst, instead of doing surgery. In my hospital bed, they gave me a shot of novacaine before sticking in a big needle to pull out the bloody synovial fluid. They pulled out 60 ccs of fluid and bandaged up my knee. There was more fluid in there,but that was the easy part to take out.


I hope it is all better now. I can't wait to go home.

Chemo is Monday.

Needle count: 34
Touch count: 17