Visit by Dr. Healey’s fellow — Sunday Sep 28th

OK. Dr. John (who just said his last name was too hard to pronounce) just concluded his visit from Debbi. He said that all of her pain is due only to the difficulty in the shoulder where the coracoid process meets the glenoid. In simpler terms, all the pain in her arm and shoulder is due to the problem that we have been describing in these blog pages all along. Based on a fresh reading of all her scans,  John said that all is as it has been except that she probably exacerbated the problem by using her arm to support her weight compensating for her weaker left side (due to the kidney operation) getting in and out of bed over the past few days.

Funny but Debbi had requested a sling yesterday to support her arm and the first words out of John’s mouth were…. “you need a sling to immobilize your arm/shoulder and let it rest”. We ordered the sling 24 hours ago and it has still not arrived. We are on a urology floor and they do not know from slings here. John said that he would bring us an appropriate sling with a strap to immobilize her arm.

John, Debbi, and I came to the conclusion that the best plan is to keep Debbi here in the hospital, maybe move her to an orthopaedic floor, and try to move the shoulder surgery up to Thursday September 2nd… 5 days ahead of schedule. We would have been able to lock all this in but John told us that Dr. Healey is now on a plane flying back from China. So we place ourselves in Dr. John’s care for a bit and wait for confirmation  on the new surgery date.

Dr. John has left to coordinate with Dr. Alex and the 5th floor resident… and to bring us a proper sling.

I am glad that Debbi is not going home today. I can not imagine how helpless I would feel if she screams out in pain and all I could do for her is say, “Honey, you have to wait another two hours for some more Tylenol.” I know there are stronger meds that can be taken at home but there is no staff to help. Best bet is to push for the early surgery and let her stay here until then.

I’m Still Here but Barely!

This entry mat take many hours since my left hand movement has been curtailed but I know you will understand. Surgery was almost a week ago. I cannot tell you that recovery has bee seamless and comfortable. I ane his best to portray what is happening, but as usually,we have run into many unforseen complications and so life looks pretty bleek to me.

I must be grateful that the surgeries we set out to accomplish our goal of getting rid of the cancer has truly been successful. BUT again I had to have 3 blood transfusions and to fight of many multiple negative reactions to prescribed medications. One made me so delirious that did not recognize Jan nor did I know if i was awake or asleep. I am costantly fighting with the floorstaff and refusing to take medications to the point where I was completely unmedicated post surgey and in screaming. Not good for the healing process.

This is Jan taking over. As you can see from Debbi’s writings, she is out of it. She just woke up for a few moments and wanted so badly to type on the blog but by the time she got comfortable with the computer, she was already exhausted and had to go back to bed. I was planning to clean up her spelling and grammar mistakes but I think it is better to preserve her original work for historical purposes.

At this point, 10AM Sunday, we are waiting for Dr. Healey’s team, as I alluded to in the previous post. I touched base with them a few minutes ago and the team is still seeing patients on their floor. When they have completed their rounds upstairs, they assured me that they will stop down and visit Debbi in 518A following which I will share their findings with you.

Kidney Surgery — Sunday Morning 4am, September 28

Debbi awoke with a screech saying that her left arm, from the shoulder down toward her elbow, was in excruciating pain. A text message by our nurse to Dr. Alex Sokol was returned in amazingly short order with an authorization for 4mg of morphine IV drip. Our nurse, Tulsi, who assisted us during Debbi’s first overnite stay just a few doors down in room 511 back in April and who is an avid reader of this blog, presented the news to Debbi by saying that she knows well that Debbi is very sensitive to medication so she recommended taking 2mg to start and see if that helps before taking maximum allowable dose. Following Tulsi’s advice, 2mg was administered over 10 minutes using Debbi’s medi-port which had been left in the “ready” state.

Now, 30 minutes after the morphine drip has completed, Debbi seems to be sleeping comfortably but looking back on this episode… hold that thought for a second… a nurse just came in and woke Debbi to take blood from her port. How do you like that!!

We used this awake period to replace three hot packs (rectangular plastic bags with two chemicals… break the bulb releasing sodium thiosulfate into some dextrose and water = heat… chemistry 101). Debbi stuffs these down the sleeve of her Memorial Sloan Kettering Cancer Center pink zippered sweatshirt to direct the heat towards her shoulder and upper arm.

The pain did increase and so, complying with Debbi’s request, Tulsi just administered the second 2mg of morphine and stayed to talk to Debbi until the drip finished. Looking over, I am hoping that Debbi will nod off shortly. Well, that didn’t happen. Share the experience. Debbi just insisted that Tulsi listen to my lungs because I cough once in a while. Nothing but post-nasal drip but Debbi wanted it checked anyway. Tulsi complied and ruled my lungs very clear. Now Debbi is trying to go back to sleep.

Let’s recap. Debbi woke with a “geschrei” just before 4am and described the pain as one might feel if they were stabbed in the shoulder with a sharp knife which was then pulled strongly down through their upper arm. Certain movements cause the pain to radiate through her arm and other arm motions are just not possible. Even if she is lying still, she might get these pains. We changed Debbi out of her hospital gowns into another set and this led to her crying out in pain. Getting Debbi back into bed was an ordeal. Once the initial morphine dosage took effect, the pain seemed to decrease, and she was able to relax and sleep. Following the second 2mg, Debbi is again sleeping and I hope she is able to sleep through till morning.

Currently we are admitted under the care of Dr. Russo but I think we need Debbi’s arm looked at by Dr. Healey’s team. Given that this is the weekend, I will wait a few minutes and call them at 6am hoping that they can pay a visit to Debbi during their morning rounds. We will have to wait for the team’s findings but I am beginning to think that Debbi is not going to be going home today. I think that it might just prove too difficult for her to perform normal two handed actions such as opening jars or dressing herself without medication that can only be given in the hospital.

Maybe she could just stay an extra day or two and the shoulder surgery could be moved up a day or two. At this point, I am just hoping for a consult from Dr. Healey’s team today.

It has taken a while to write this blog entry. While Debbi does seem to be sleeping, every now and then she gasps in pain and then goes right back to sleep. We definitely have to have this examined today.

I just reached a member of Dr. Healey’s team and was told that his team will see Debbi during their 8am rounds. Perfect.

6:15AM… time for a short nap. Night night.

Kidney Surgery — Saturday Night, Sep 27th

A Gut Voch to all.

Shabbos was the best day yet. Debbi walked about a mile and a half. She got separated from her IV drip and is only using the medications she was taking prior to coming in for kidney surgery. Still, there are periods of intense pain but she is trying to deal with this as best as she can without resorting to stronger narcotics.

By and large, Debbi describes the pain (when not handled well by the meds) as if a spear was jabbed in her back where the epidural was administered and the spear continues through her body and emerges from the 10″ scar running from her navel around to her right side. If that pain is not “sufficient enough” she still has severe pain in her shoulder, exacerbated by trying to use her left arm to ease herself into and out of the hospital bed which is basically anchored along the wall to her right when she is reclining. Most likely she tried to pull her legs up onto the bed by holding fast with her left arm onto the side panels that keep patients from falling out and the tension in her arm turned into more shoulder pain.

There is still a strong possibility that she will be released tomorrow morning but we wont know for sure until morning rounds. We do want to be careful because at home, Debbi will have much more time where she is alone and I do not want her to get ideas in her head like… “Oh, I will just run next door to Jubilee market and pick up some food for Rosh Hashana.” We will have a week of coverage from visiting nurses but I do have to spend some time on the computer tomorrow and try to get a full day of work in on Monday prior to the holiday. So, this will translate into some alone time. I hope she uses it to rest.

Most likely she will have short visits from friends but she is still going to need substantial periods of rest. After all, she is slated to be back here at Sloan for the shoulder surgery on Oct 7th.

Since I have not blogged since Thursday, I must tell you that we have had several visits from Dr. Russo and Dr. Sokol and they repeatedly expressed that they are very pleased with Debbi’s progress. Additionally, Dr. Michael Zelefsky visited and added impressions of the positive reports by Debbi’s team. Michael assured Debbi that compared to the kidney surgery, the shoulder surgery should be much easier and that she will be in good hands with Dr. Healey, the head of Orthopaedics here at MSKCC, who has been doing these kind of surgeries for years.

We still have an issue with the exact dosage and frequency of Debbi’s medication but at least she can be lucid, carry on a conversation, and clearly enumerate and detail her problems with the lack of attention of some of the nursing staff. Just as in earlier blogs, she can also let me know, quite clearly, when I have not adjusted her pillows, bed linens, drinking cups, food, phone, etc. correctly so I am confident that she is making progress on many fronts.

Lets see what happens in the morning. Either we will be released Sunday or Monday or we stay through Rosh Hashana and possibly straight into shoulder surgery. We shall see.

Love to all.

Kidney Surgery — Thursday Sep 25

Happy Birthday Shira!!

Many friends have asked about coming to Memorial Sloan Kettering to visit Debbi. We thank them for their love and caring but frankly Debbi is just not up to it.

The epidural was removed earlier today and so the pain medication has shifted to Dilaudin, by mouth. Debbi, who as we all know now is very sensitive to medications, is having issues that may be due to the Fentanyl that was in the epidural and taken away, or, it could be due to the Dilaudin she just started… but it any case, she is nodding off without notice… kind of like sleep apnea. She was just drinking from a bottle of Evian, nodded off, and it spilled all over her.

Besides this, she is experiencing fears that she can’t make decisions or figure out what she wants to do. We have been talking to the medical team about managing the situation but it is going to take some time to resolve. And, the fact that it is not resolved right now is causing Debbi further consternation and anxiety and so the problem is actually snowballing. Plus the anxiety is leading to fear and so Debbi is at once, in pain, anxious, fearful, scared, shaking etc.

I am trying to get the Pain Team to pay her another visit but as yet they have not arrived. The anxiety may just be the key. She has taken some Ativan, just like she has been taken all along, but the Team might just have to increase the dose. Maybe I am wrong but I think that the anxiety is the key driver of the grossed-up problem even more than the pain itself.

I brought some movies on DVD from home and we tried to watch The Music Man from Netflix Instant Access last night but she fell asleep between the start of the movie and Professor Harold Hill’s arrival in River City. Maybe we could try Jack Nicholson & Diane Keaton in Something’s Gotta Give and see if Debbi can watch the movie from the beginning and stay conscious until the point where Jack’s character Harry suffers the heart attack. (Ok… I know… a bit of wry humor). But, I did get accused of “messing with her head” when I insisted several times that she was sleeping when she was convinced that she was constantly awake and alert.

Knowing that it is drug induced, and not a measure of her true person, we might as well have a bit of humor to tide us over until either the drugs wear off or the medical team can suggest and implement a better alternative therapy.

I wouldn’t film these scenes without her permission but as time progresses, weeks and months into the life she regains when she becomes cancer free, I assure you that these vignettes would make for some humorous clips on You Tube.

Kidney Surgery — Wednesday Sep 24

Debbi went through a very painful cycle but all is back to normal now. It seems that while the Fentanyl Citrate concentration was adjusted, the dosing pump was not set correctly once the medicine was replaced. The net effect was that Debbi was getting less than 25% of the required medicine. Debbi kept saying that she felt much more pain than anything she had ever experienced… much more than childbirth, much more than the pain in her shoulder, much more than anything else.

During the night we requested the Pain Team to come but no one came. Finally at about 8am, after the new nursing shift arrived, our nurse called the Pain Team again, said Debbi was in excruciating pain and someone was here within 5 minutes. This pain doctor was very efficient, quickly reviewed the situation, and determined that the incorrect settings were the culprit. She reassured Debbi that all was going to be ok and administered a special bolus of the epidural medicine while she reprogrammed the pump. Just as she said, within 5 minutes all signs of the pain were gone and Debbi was able to relax.

Somehow, this period of intense pain set our progress back a bit and through 2pm today, the main activity has been sleeping. We were visited by our Physical Therapist who insisted Debbi get up and take a lap around the floor. He also did breathing exercises with Debbi. She fell asleep in between the exercises.

Also, we were visited by a team from Alternative Medicine who provided a reflexology foot massage accompanied by a live harp performance. Debbi was asleep as soon as the foot massage began.

We were given “orders” to keep up with the breathing exercises and to complete 5 additional laps around the floor. Somehow if she can stay awake, I think Debbi would really enjoy a class being offered later entitiled Relaxation Through Water Color. She has always enjoyed painting and she could certainly use the relaxation aspect.

As I mentioned, at 2pm she is sleeping comfortably and has been cleared to try solid food. I handed her the menu but she is just too tired to deal with ordering food even though she has not eaten solid food since 6pm Sunday night … almost 3 whole days.

Ok. More later. We are looking for good improvement from here.

Debbi sends her Love to all.

Kidney Surgery — Summary of day 1

Several small but important strides were taken today in dealing with post-operation effects. Debbi managed to get up and on three occasions complete laps around the floor. At 130 of my paces that probably works out to around 350 feet or a bit longer than a football field per lap. Thirteen laps equals one mile. In addition, she trended towards “clearheadedness” (if that is a word). She also was able to eat a bit of jello and drink a little soup.

Dr. Russo stopped by and reiterated that all went well and that he was very pleased with the result.

The fun activity began about an hour ago. All of a sudden it became apparent that the dosage of Fentanyl going to the epidural was just too strong. Debbi started shaking and became very anxious. Jenny, our new nurse as of 7:30 pm acted quickly to notify pain management and recommend to them that they lower the concentration of the narcotic. This took a while to stabilize things but Debbi seems much better now. She had been a bit delerious and had shaking fits from time to time. Now she says that she is sore but overall in less pain than before. Certainly she seems more lucid especially when describing her pain to Jenny. Upon learning that Debbi is a regular Ativan user (Debbi takes this drug for its combination of anti-anxiety and anti-nausea effects), Jenny arranged for this medication regularly, as well as a one time extra dose prior to going to sleep for the night. Vital signs are expected to be taken at 11:30 and as it is 10:30 now, she will wait the hour before getting the extra dose. We are hoping that this will translate into a good night sleep.

So to all… a good night sleep and we look forward to more improvements tomorrow.

Zye Gezunt.

Kidney Surgery — sixth report

At approximately 10AM, Debbi was moved to her room on the 5th floor. She continues to be very drowsy but at times she wakes and is mentally alert. Soon the pain level increases, she hits the magic button, a dose of Fentanyl Citrate / Bupivacaine HCl hits the epidural and with the subsiding of pain, she falls back asleep.

By the end of the day we are hoping she will be able to have a liquid lunch, walk around a bit, and try some solids for dinner. Maybe Debbi will even dictate a message for the blog. We shall see.

Kidney Surgery — fourth report

I just woke up at 3AM so I am on my way to see her again and will report further.

Well, she is definitely working her way out. She seems much more lucid and the epidural is doing a great job of keeping her pain free. She says “Hi” to everyone and she expressed how much she appreciates everyones good thoughts and prayers. To help her along, the vigilant staff is in the process of giving her a second blood transfusion. Debbi said that when she saw the “white sleeve” she knew she was being given blood.

While it normally takes me only 6 minutes to give blood, it is usually administered over a two hour span. A few months ago in Urgent Care, one particular transfusion seemed to be endless. Our nurse, upon seeing our frustration, went to fetch a “white sleeve” (our name.. not the official name). Anyway, the white sleeve is placed over the bag of blood and just like a blood pressure cuff, the squeeze bulb puts pressure on the bag of blood so that it flows with some power. Simple application but highly effective. We have definitely seen some interesting medical procedures along the way.

Debbi sends her love to everyone and I plan to see her again around 5:30am.

Prayers and best wishes still accepted and gratefully appreciated.

Nite Nite.