Good Morning Nurse Ratchett

The general orthopaedic team made its rounds accompanied by Nurse Ratchett. Although not identified specifically, I refer to her as Nurse Ratchett because, in addition to a slight physical resemblance and obviously being an authority figure, in my humble opinion, she single handedly rushed us out of here following the shoulder surgery without a cogent plan for meds. This of course led to GUESS THE DOSE.

So Nurse Ratchett comes in this morning at 7am and says, “Why are you on IV meds. They wont help you. You can’t go home on IV meds. Blah Blah Blah.”

I reminded her (giving her the benefit of the doubt that she read Debbi’s chart) that Debbi is only here because the meds at home did not work and following 3 days of vomiting and countless calls to the Pain Team, she came to Urgent Care and was admitted to the floor on the advice of a fellow from Dr. Healey’s team so that she could get IV meds and give her insides a break until the pain management is reformulated.

Nurse Ratchett really didn’t like that response. “Well aren’t you on Dilaudid at home?”, she quipped.

“Yes, and it is working in regards to pain control but it seems that its side effects are getting in the way.”, I retorted.

Then, before she could say… “pack your bags we need the room for someone else”, I interjected… “a Doctor who is a friend suggested that maybe we would be better served by a Duragesic patch?”.

“Has she ever had one?”, Nurse Ratchett replied.

“No, but isn’t it possible that the patch would be as effective with less of a nauseating effect?”, I parried. ”

All right”, said Nurse Ratchett quietly… “I’ll call the Pain Team” she mumbled.

“Thank you”, I offered appreciatively.

Back in 718B

Debbi called me at work at around 5pm Thursday saying that she was not able to hold down even simple foods like crackers, soup, etc. all day and that based on a phone call to Dr. Healey’s office, she was told to report to Urgent Care. I finished up a meeting and met her at 1275 York ave in the Urgent Care waiting area. She had had her vital signs taken and they looked good but she herself did not look so hot.

With several other people in the waiting area and several more on beds in the hallway, my job was to get her onto a bed in the hallway ASAP because I could tell that she was very uncomfortable in the waiting room chairs and that that uncomfortableness would rapidly translate into anxiety which would escalate the pain that she was feeling. Naturally, Debbi was not allowed any food or fluid by mouth and as we were waiting, the time for her meds came and went. After an hour, I noticed a bed in the hallway had opened up and I remarked to the coordinator that Debbi was extremely uncomfortable, needed meds, and that on previous visits to urgent care, she had been given a bed, had her port accessed, started IV fluids, and was given pain meds all in the hallway. Somehow we got lucky again and the scenario was repeated. Just the opportunity to lie down was a significant improvement especially because we were able to get the kind of gurney with the three inch thick mattress rather than the one inch thick variety. Shortly thereafter, nurse Margaret was on the scene to access the port, take bloods, and start the IV. This alone reduced some anxiety as Debbi had been worried about the net amount of fluids being too low and possibly impairing her sole remaining kidney.

It took another hour for a bed in the ward to open up but finally we were moved to stall 18 and Debbi was given 1mg of Dilaudid IV and some Ativan as well. Within 15 minutes the pain had been reduced significantly and she was more relaxed as well. Some Zophran was next and the nausea was diminshed. Dr. Scott, a representative from Dr. Healey’s team suggested that Debbi stay overnight and have the Anesthesia Pain team have another go at the GUESS THE DOSE game. This time they might actually try Dr. Rothkopf’s suggestion of moving to a Duragesic patch.

A quick scan of some of the web pages that come up in a Google search shows that just like all of these opioid pain medications, there are some risks as well as the fact that different people tolerate them or find them harmful in differring degrees. I would like to do some additional research but it is already 2am and last night I was not able to get back to sleep following Debbi’s alarm clock going off at 2:30 am to wake her for her 1mg dose of Dilaudid.

I managed to have a discussion with a representative from the pain team at 4am. Upon returning to the exact side of the room that we were assigned following the shoulder surgery, Debbi was given a Dilaudid 2mg pill for pain. I found it a bit surprising since we came in due to nausea and vomiting and Debbi hadn’t eaten anything in almost 12 hours. So I asked the rep why she was being given medication by mouth and if so, why only half of the dosage assigned at home. The rep reviewed the orders left by the physician in Urgent Care and modified her orders to go back to IV meds until the pain team could see her during the day shift.

Urgent Care Visit

Although we got many wonderful entries in the GUESS THE DOSE game, on the advice of Debbi’s doctors we really didn’t deviate much from the course of action we had put in practice which was 1/2 of one Percocet (5mg Oxycodone – 325mg Tylenol). Debbi had a pretty good day yesterday including some shopping with our close friends Jak & Ilona who are in from Istanbul, Turkey.

Just before bed, Debbi had a fit of nausea and vomited. She managed to get some sleep but at 4am, she woke with pain in her chest and stomach as well as anxiety. Too many factors at once for us to deal with so we jumped in a black car and headed over to 1275 York. Walking in to Urgent Care we were surprised to see that no other patients were in the center and that our favorite nurse Alex was on duty.

Quickly the attending physician came to speak to us… he even went and grabbed a blanket for Debbi because he saw that she was cold. Bloods were drawn and Debbi was started on an IV containing Ativan which Debbi is used to and is particularly good for her because it addresses anxiety and nausea simultaneously. Looking at her history in the computer, the team knows that the issue is the meds but because she had the pain in her chest and stomach, they put in order for x-rays to insure all is well. Blood pressure, temperature, and EKG all checked out normal.

Even though we have been here in Urgent Care many times, Debbi is usually reluctant to leave the apartment to come here. Either it will be too crowded, maybe she will not be able to get a gurney to lay down on while waiting, maybe they wont be able to help her… many reasons she does not want to visit Urgent Care. Usually, just like this morning, she turns to me and thanks me for bringing her in. It just seemed to me that there were too many factors to deal with by ourselves. So, lets let the experts take a look. We were also told that Dr. Healey should be in around 7:30.

X-rays of the chest, lungs, and stomach reported all clear. The blood tests were also all good and Debbi’s hemoglobin was 9.6 which is below 11.3, the lower limit of normal range, but high enough to obviate the need for a blood transfusion.

To recap, all looks fine. Debbi is resting comfortably as we await visits from the Anesthesia Pain Team and from Dr. Healey’s Orthopaedic team in order to arrive at some determination of a better treatment regimen. We plan to ask the team about some of the GUESS THE DOSE suggestions… especially about one from Dr. Michael Rothkopf concerning moving from Percocet to a time release patch containing Fentanyl that he says does not cause nausea. Thanks to Dr. Michael & all the other contestants.

The Pain Team was just here. In conversation with Debbi, they decided to go with Dilaudid in a low strength because that seemed to work for her over the 7 hours she was here in Urgent Care. One of the reasons for not going to the patch was that the pain team maintain that Debbi is healing from the surgeries and think that the pill will give them added flexibility. So it is another trial but we have the contact info and will certainly call at the first indication that something is amiss. 

Time to get the port de-accessed, go home, and prepare for Sukkos.

Chag Sameach.

GUESS THE DOSE; the game show

Hello valued readers and welcome to this week’s episode of GUESS THE DOSE… the hit game show where you, our viewers compete for cash and prizes by submitting your guesses for how much of each medicine our celebrity patient should take. (audience applause). I am Jan, your host, and this week our celebrity patient is Deborah Michelle, famous for her Debbi’s Journey blog. Debbi just came home from Memorial Sloan Kettering Cancer Center following an operation to remove cancer from a segment of bone between her left coracoid process and glenoid … or her left shoulder if you prefer.

Johnny, our narrator, will explain the rules of our game… Heeeeeer’s Johnny.

Thank you, Jan. OK. Let’s get right to it. In a minute, Jan is going to list all the drugs and their recommended dosages specified at the time of Debbi’s release from the hospital on Friday October 10th. Now even though Debbi was prescribed all these medications and was advised to take them all, it has been observed that when taking these drugs exactly as specified, Debbi gets quite loopy and is subject to instantaneously nodding off in the middle of eating, drinking, talking, etc. And, she can become quite nauseas on occasion. You, our audience, get to put on your pharmacist hats and submit your GUESS THE DOSE entry using the special keyboard by the side of your seat. Those of you playing at home can just submit your guesses over the web. See Online Entry Form for the online entry form.

We will determine the winner by having Debbi try the dosing regimen in each submission and we will then judge each entry according to the amout of pain relief she feels. Points will be lost if the drug combinations cause her to nod off in the middle of her normal every day activities and points will be awarded based on minimization of pain, dizziness, and nausea. Remember that the protocol has to cover her pain from 6AM to 10PM, from the time she wakes up until the time she goes to sleep. OK, Jan… we are back to you.

Thanks Johhny for that great summary. Like Johnny said, I am going to layout the medicines and the exact instructions on the labels so lets get right to it… but first, let me just remind everybody that they should take into effect a few important details… (1) Debbi is very sensitive to medication. (2) She is still feeling some pain from the nephrectomy. (3) Her body is healing from the two surgeries day by day. (4) Be sure to include the side effects of the medicines themselves because some of them are constipating. (5) You may use the links below to research the efficacy of the listed drugs.

Generic Name Strength Description Dosing on Label
Oxymorphone 40mg long acting pain medication 1 tablet every 12 hours
Percocet 5mg-325mg Oxycodone – Tylenol 1 to 2 tablets every 4 hours as needed
Lyrica 50mg long acting drug for nerve pain 1 tablet every 12 hours
Zophran 8mg Anti Nausea 1 tablet every 6 hours as needed
Ativan 1mg reduces anxiety and combats nausea 1 tablet every 6 hours as needed
Colace 100mg Stool softener 3x per day
dosage specifed Oct 10, 2008 following release from shoulder surgery

Friends here in our audience and you friends at home as well, it is time to submit your dosing. Anything from zero (don’t include this drug in your treatment) to the dosage listed on the label is allowable. So take a few minutes, make your selections, and press the submit button. Debbi will be following each dosing protocol. We will monitor her progress and we will announce the winner on next week’s show. Debbi promises the winner a fresh hundred dollar bill and two dozen of her famous walnut rugelach. She is just looking from some relief from the pain and has not found it yet. Can you help her????

Here is that Online Entry Form again for your convenience: Online Entry Form.
Remember only one entry per person per week. Tune back in next week to see the winning regimen. Till then we hope you have enjoyed watching and playing GUESS THE DOSE (audience applause).

2nd Day Post Op — Shoulder Surgery

Here we are still in the now familiar role of trying to find an appropriate combination of drugs to fight pain for an appropriate amount of time. Oxymorphone, Lyrica, Ativan, Percocet, Tylenol, Morphine… the list goes on… how much, how often… still no answers. The Anesthesia Pain team, Aida and company, have been working hard to get things under control but just like a trial and error experiment, medicine is given, there is a delay until it takes effect and then it is monitored to see its efficacy and its duration. With long-acting and shorter-acting drugs in her already, it is difficult to separate out the performance of each drug independently yet this is one of the determinants as to whether or not we go home tomorrow (Friday Oct 10th).

Dr. John Healey stopped in to see us before he begins a trip tomorrow to attend a conference in Chicago. He prescribed a series of exercises to keep Debbi’s left elbow in good working order and to make sure it does not stiffen by staying stationary in the sling day after day. Dr. Healey had to detach the deltoid muscle from the collarbone in order to repair the space between the base of the coracoid process and the glenoid following which he reattached the deltoid. Therefore Dr. Healey cautioned Debbi to use her arm for certain exercises but to be careful to avoid all actions for which the deltoid would be called upon to counteract gravity. One exercise involves leaning over and letting her left arm trace out circles as it dangles by her side. Not allowed would be raising her left elbow in front of her until her upper arm is parallel to the floor. To help her visualize the various permitted and restricted activities, an occupational therapist came by with a helpful set of exercises and illustrations.

Despite the frustrations, Debbi is making progress. She gets in and out of bed with fluid motions… “runs” laps around the floor… everything goes well until the pain breaks through. Then …. WATCH OUT!!. One thing better about being home is that when Debbi wants a pill she can take it right away. Here she has to wait for the nurse (who very well might be attending to the needs of other patients), the nurse has to check the computer to make sure that Debbi is due for whatever medication, request the drugs from the pharmacy, collect the drugs, and bring them to Debbi. Now, knowing Debbi, is it any surprise that she has her entire pharmacy from home with her here in the hospital. Yet, any even slight hint that she might reach into her purse and take one of her own pills (self-medication) draws the nastiest gnarls from whomever happens to hear her remark. And with good measure. Debbi can be doing something (like eating or drinking) and then pass out for a 20 minute nap. Imagine if she took her own Oxycondone and then awoke to a nurse’s request for her to take a second one. Anyway, I think Debbi is just using the back-up drugs as a threat such as the following: “If they don’t get here in 30 minutes with my meds, I am just going to take my own!” The nurses have always arrived in time. Whether or not the drugs actually work is another matter.

Throughout the chemo, Debbi lost a very small amount of hair. During this hospital stay it has become apparent, basically due to the linoleum floor, that she seems to be losing small clumps of say 10-15 hairs at a time. She still has a very respectable pony tail and a quite full head of hair but it seems that after some two months post-chemo… some hair is starting to fall out.

Our thoughts are now centered on reviewing the steps to be discharged tomorrow. Dr. Healey enumerated 4 key items as the determining factors. (1) Be able to be weaned from the IV pain medication. (2) No fever in 24 hours. (3) Removal of the surgical drain from the incision. (4) Pain treated by oral medication.

Debbi has not been receiving pain meds via the IV for over 12 hours so #1 is satisfied. 7pm-8pm has been the witching hour since the chemo began. Like the Bermuda Triangle, in this hour anything can happen. Most trips to Urgent Care began in this time slot. Yesterday, Debbi’s temperature in the witching hour was 100.1 which qualifies here as fever. Today however, her temperature was 98.6 so if all stays stable we may have satisfied #2. This morning, one of Dr. Healey’s fellows came by and adjusted her drain saying he would be back Friday morning to remove it so we should be good on #3 as well. That leaves #4 which as I have described, in probably monotonous detail, is the $64 question. Will the pain be under management such that Debbi can be sent home with a suitable plan to control her discomfort?

Stay tuned for another episode of Debbi’s Journey to find out.

1st Day Post Op Shoulder Surgery

Although she says she is in considerable pain, Debbi does admit that she is feeling better. Partially this is due to having to battle only the pain caused by the surgery unlike the kidney surgery from which she had to recover and battle the then extant pain in her shoulder. Dr. Healey stopped by this morning and the Pain Team is supposed to be revising her medication from Fentanyl to the oxycondone/percocet/ativan that she has been taking all along.

So, the process over the next few days will probably advance slowly but we have every confidence that it will be moving forward. Hopefully Debbi will be able to blog a little later in the day.

Shoulder Surgery — Update #2

It is now 4pm. Debbi has been in the recovery room for about an hour. I was able to visit her once thus far and while she mentioned that she was in pain, I could tell that she was very happy when I reiterated the conversation I had had with Dr. Healey a few minutes earlier. Dr. Healey said that all went very well. He observed, in actuality, only what the scans and x-rays indicated. His surgery lasted about 3 hours (not including time spent by the anesthesiologist prior to Dr. Healey’s initial incision.)

Dr. Healey’s summary of the operation was exactly as he had described it to Debbi and I over the course of our earlier visits to his office. Move a muscle or two. Grind out the cancer from the juncture of the coracoid process and the glenoid. Freeze out any remaining cancer along the margins using liquid nitrogen. Use a pin or two along with some bone cement to put the shoulder back together while always being careful to preserve nerves and operational functionality. Then just close everything up leaving a drain for good measure. So simple… even a caveman could do it. OOPS… that is what they say in the GEICO ads.

“What happens from here?” was the next question I posed to Dr. Healey. He said the following:

Remember Jan, you have a team of top people on Debbi’s side. Let’s let her recover from the operation and then Drs. Zelefsky, Bajorin, Russo, and I will confer and probably Dr. Bajorin will then take the lead on a round of scans to evaluate where we stand at this point. I truly think all went very well and I am hoping and praying to G-d that she is now indeed cancer free.

In my book, you can’t get much better than that.

I am hanging out in the waiting room because I want Debbi to rest for a few hours and to receive the instant attention that only the recovery room staff can provide.

People here at MSKCC always amaze me. A nurse named Josefa Walten, who assisted us prior to the KIDNEY surgery two weeks ago, just came to find me in the waiting room to ask how Debbi was doing. She had seen Debbi’s name on the surgery schedule and wanted to make sure I would let Debbi know that she was thinking of her and wanted to send a special hug and kiss along with her love to my dear wife.

Also, as I was proceeding to the recovery room to see Debbi, I was in the elevator with a nurse practicioner named Aida Milcetic. Aida is a key member of the Pain Team and played an special role in figuring out that Debbi was not getting the proper dosage of Fentanyl during our previous stay. I introduced myself to Aida and expressed gratitude for her assistance during our last visit. Not being timid, I asked Aida to accompany me to see Debbi and asked to have Debbi’s name added to the list for which the Pain Team makes special rounds. Aida informed me that she will be working daytime hours for the rest of the week and will make sure to monitor the pain situation and stop in on Debbi each day.

It sure is helpful to get to know the individuals that are most responsible for the superior care here at Sloan Kettering. One never knows when their help will be useful and appreciated in the future and addressing these stellar individuals by name seems to go quite a long way.

Shoulder Surgery — October 7th, 2008

Hello sports fans… this has been a season of lasts… last Yankee game at the House that Ruth built, last Mets game at Shea, and we are hoping that this will be Debbi’s last operation at MSKCC.

We arrived at 7:45am and were ushered into the pre-surgical suite for gowning, another check of vital signs, and a review of medical history. We were visited by Dr John (who would not tell us his last name) during our stay for the nephrectomy. This time, we twisted his arm and he told us that if we say “papa nice to see you” we would be very close to the pronunciation of Papanisstociu. Dr John brought his unique sense of humor and wide smile to cheer up Debbi and give her encouragement for the operation. He carefully marked her left shoulder so that there would not be any mixups in the OR. Shortly thereafter, a nurse came to escort Debbi to the surgical suites. Hugs and Kisses and she was off.

I expect the operation to take about 3 hours so I hope to update everyone around 1pm.

Stay tuned.

IT’S BEEN AWHILE

I have not had the stamina to really sit since the kidney surgery to write on the blog.  But from the mnay notes and cards, I am appreciative of the continued well wishes.

Today I will meet with Dr. Healey and prepare for shoulder surgery tomorrow.  I have hardly recovered from the kidney surgery and am still weak and in pain but I am still willing to march on and get closure.  The most difficult part of this journey now is the pain management and the drugs are really making me ride the emotional roller-coaster.  My precious husband has really been put through the wringer these past few days watching me suffer and just feeling helpless to ease the pain or make me comfortable.  But he continues to try. We are both worn out and our spirits are waning.  We have not given up hope that we will beat this disease but the road has worn us down.

I may have to accept that my body is not matching my return to school calendar and may again have to ask for another leave extension.  I really do not want to do this but I am beginning to get it into my head that my health has to be my priority and it doesn’t know time an dates.  Frustrating, yes, but I do know that today I do not have enough stamina to give the children one hour let alone one day. ACCEPTANCE! Such a difficult word for me.

For today, I will get showered, show up at the doctor’s office and try to ready myself for tomorrow.  Even though the sun is not out, I will breathe in the fresh crisp autumn air and be grateful that I can.