At approximately 11pm, Dr Russo met me and described a day of three challenging surgeries including Debbi’s. As in the other surgeries, he described going fiber by fiber, tissue by tissue, in order to be as thorough as possible. He did seem very pleased with the outcome. I do not know about Debbi, but I for one did not get a peek at the kidney.
Shortly after midnight I was allowed back in the recovery room to see my brave wife. Still at the beginning stages of working her way out of the anesthesia, she was happy to see me but uncomfortable at the lack of control. Any one who knows her knows, she likes to be in control. Well, this whole journey has been about lack of control and it is just going to take time to awake from the meds.
Due to the late hour, the decision was made to retain Debbi for monitoring in the recovery suite rather than send her down to her assigned room on the floor below. After about 15 minutes, I was asked to leave so that she could rest but was I was told to go for a nap in her room and check back with the recovery unit in a few hours.
Just got the first update from the nurses in the OR at 8:40pm. Report said that they began 1 hour ago and that Dr. Russo is now beginning to expose the kidney. Debbi is said to be doing well based on vital signs, etc.
You know and I know that Debbi arrived in the OR before 7pm so almost two hours have elapsed so it seems that we are in for an extended wait. At least Debbi is holding up well. We are all praying that Dr. Russo’s hands are guided from Above.
After arriving at 2:30, things progressed quickly … until they didn’t. In short order, Debbi was moved to the pre-surgery area, her medi-port was accessed, she was tapped for an epidural and then we waited. Finally, at 6:15, a OR nurse came to see her and then at 6:45 she went to the operating room. Expectation is that the surgery will take 3-3.5 hours meaning that I should hear from Dr. Russo somewhere between 9:45 and 10:30pm. It will then be another hour before they let me into the recovery room to see Debbi and it will be another hour after that before we will go to a patient room upstairs. I hope to keep blog readers informed as soon as I learn anything but there is likely to be no news until at least 10pm. Talk to you then.
The anticipation of this operation finally coming to fruition has exhausted me physically and emotionally. I am so ready to get into the recovery mode and have this poisonous organ out of my body but I must admit there are many fears and questions attached to it.
I am trying to stay away from the unanswered questions of How did this happen? Why me? What could I have done differently? Will they be able to get all the cancer out? And accept the situation as it stands. Not always so easy. I will never have these answers but I sure am hoping that I will not have to ask them again once both surgeries are complete.
The thought of being confined and in bed again is very troublesome to me. I dislike having my freedom taken away and it gives me too much time to think. I have devoured many novels, made quite a few sweaters and blankets and have used my creative ability to keep my going while being confined to a small area.
And so…….Tomorrow at 4:30PM, if all is on schedule, I will be in surgery having the kidney removed. I asked Jan to bring a large Glad Plastic storage container with him and ask for the kidney. I really wish to see what this enemy really looked like. Black marks on x-ray scans just don’t do it for me. He laughs at me but says that he will ask them if they will take pictures. In that case, I don’t even have to say cheese. As expected, Jan plans to move into the hospital with me and so I may not need nursing care after all. He will try to do as much work as possible from Sloan.
I have to believe that there is plan form me that I am unaware of. As I live each minute some of it unfolds but as all of us, life is fragile and we really cannot anticipate what will happen. This reminds me how little control I have over what is happening to me and around me. There has to be something much greater than me who knows a lot more and is a lot smarter than I’ll ever be. It’s time to have a talk with that being to be thankful for the life I have had thus far and to hope there is much much more to come. That is all that is in my ability. The rest I just have to wait and see.
Let’s start on the good side. I am in the process of having a Pajama Party with Jonah since his Mom and Dad went on a date last night and decided to stay over. Jonah and I are playing to give them a little more time to sleep. What a joy after a very hard night.
I am in a lot more pain and therefore back on the heavier oxycodone and truly looking forward to having the kidney removed on Monday. I wish it were today!
I had some very upsetting news about another friend, my age, who had a stroke on Saturday and they have found a brain tumor! Another healthy, vibrant woman and I am so hurting for her. She is now in the the biopsy, wait and diagnose stage which is the worst. Please say an extra prayer for her. All of our energy working together has helped me along this rocky road. I am so grateful we are past that and heading into the big guns treatment these next 3 weeks. At this point I am resigned and ready.
This afternoon I will trek to Queens for Jonah’s Pidyon Ha’Ben. A special ceremony for 31 day old first born male babies born naturally. Long story but a special celebration. Jonah and my kids have truly made this journey worth fighting for. They give me such pleasure and I want to just see them forever.
Jonah has played enough now. I think it time for rocking and rest. Please pray hard for all of us. The circle is very important and the more we help each other, the more strength we create. I am one very fortunate and grateful person today.
The recovery from Tuesday’s ordeal was simple. A little uncomfortable around the neck where the umbrella was accessed but mostly the large bandaid was pulling and itching. I solved the problem by replacing the bandaid and viola, no more discomfort. I am unable to shower until Friday so the very small opening does not get wet but other than that….pretty simple.
I have no plans for today but I am sure I will think of something to do to savor these last days of freedom. I am trying to eat well, rest well, and keep my brain from running wild (That is a job in itself) but I am truly ready for Monday and the removal of this kidney.
After the whirlwind 3 times in the operating room yesterday, the first procedure is complete and I am still standing. The frustration and length of time at Sloan lowered my spirits so much that I told Jan that I have no more to fight with. I continually cried and the more agitated I became the more irregular my heart beat became. I love when everyone looking down at you on the table reminds you to relax when they are not the one’s who’s life is on the line here. Emotionally, my fuse is getting shorter and shorter and Spiritually I am spent.
Today is a new day. I am uncomfortable in the neck area through which the “tulip” was inserted, My port is sore since it was accessed all day, and my shoulder is really painful since I laid on a very uncomfortable gurney for 11 hours, but that was yesterday. I am able to get up and feed myself, read my book, do a little laundry, and possibly take a walk outside in the sunshine. Life looks a lot better when I am not in the hospital. Let’s see what surprises lie ahead for the kidney surgery on Monday.
Sorry for the negativity but I am just spent. Today will be a day to meditate, write and rebuild. I need an attitude adjustment before Monday so I can go in there are fight. That’s my goal for the rest of the week. Accept what happens and go through it!
What an exhausting day. Debbi and I arrived at Sloan Kettering this morning at 9:30am to have a Tulip filter installed in her vena cava to prevent any blood clots which might just break loose during the upcoming surgeries. Well, all was progressing smoothly until we started talking to the Interventional Radiologist about the procedure. It came out that there was some doubt as to exactly at which distance from the kidney Dr. Russo (the kidney surgeon) required the filter to be placed. So, a call to Dr. Russo’s office found him unvailable for two hours and we waited for him to contact the radiologist.
All was worked out and we got the go ahead. I kissed Debbi and headed to the waiting room to do some work. No sooner had I set up my computers that I received a phone call from the radiologist saying that he had started to sedate Debbi when he realized that she was experiencing some extra heart beats (throwing some pre-ventrical contractions PVCs). Since the guide tube for the filter must be threaded from the jugular vein in her neck close to the heart and down into the vena cava, the radiologist was concerned for Debbi’s safety.
We waited again until a cardiologist arrived and did a work-up. He realized that in Debbi’s computer record highlighted that she was throwing similar PVC patterns during her visit to Urgent Care on August 25th. At that time she was kept overnight and monitored via telemetry. She was then released the with the PVCs attributed to high anxiety and the fact that Debbi decided to take herself off the anxiety drug Ativan cold turkey. Therefore, the cardiology fellow had blood drawn and analyzed finding that all was well except her Magnesium count was a bit low. The cardiologist recommended that the radiologist proceed with the filter installation. We were told that we would be the next patient and to expect a 30 minute wait.
After 45 minutes, we were told that we were taken off the list because we had to wait to be seen by the senior cardiology fellow. Add more delays until the Senior Cardiologist arrived reviewed her colleagues write-up and signs off Debbi for the procedure. All good to go. Now we were told that we are back on the list with a wait time of 45 more minutes. By now it is about 4pm and Debbi is very uncomfortable having laid on a gurney with a thin mattress all day long. Fits of crying, cries of “get me out of here… I want to just go home”, etc. The minutes dragged on and on and finally at 5pm the team comes and tells Debbi… “third time today in room 3”. As I mentioned in the title, third time was the charm and all went smoothly.
The filter was installed and positioned as required by Dr. Russo. The filter looks like a collection of 10 thin wires gathered together at one end and splayed apart at the other. Made of a special metallic alloy, it is guaranteed not to set off airport medical detectors. Referred to as an umbrella, the filter is designed to catch any clots coming from the lower body before they can migrate to the heart or the lungs. By trapping clots, usage of the umbrella aims to prevent heart attack, stroke, and pulmonary embolisms and to keep everything functioning properly.
Recovery was just under two hours, including some Magnesium in an IV, and now at 7:30 we are headed back to the West Side. Debbi is a bit wasted from the experience but is perky and ready and eager to go home… so off we go.
Although I thought I would be able to sleep in this morning, the pain in my shoulder was so out of control that I finally had to break down and take stronger medication. I have my suspicions of why the pain increased but of course my mind wants me to think the cancer is running rampant in that area without the chemo. My main suspicion is that the shoulder was jostled more than usual from riding 4 hours in the car or I have been using it too much. Those are the sane answers.
This experience was a reminder that there will be a lot more discomfort up and coming in the near future when the surgeries begin and I have to take the stronger meds whether I like it or not. It also upsets me because if I take the meds, I am confined to the apartment and the neighborhood and cannot drive. Losing my freedom is going to be quite difficult for me since I have been enjoying feeling so much better since the chemo treatments. I feel like I am going backwards but I have to remind myself that I am marching forward to get through the next set of hurdles.
I am not afraid of these operations. They are my ticket to get where I want to be; healthy and back to work. I pray that all goes according to plan and I am told that I am cancer free. For that I am willing to do almost anything (except more chemo). But I probably would agree to that also if I knew it would save my life. My biggest fear is that after all of this, the doctors tell me they can’t get all the cancer and there will be continuous treatments to be reckoned with.
Tomorrow is the “easy” round but still I have my reservations about anesthesia since I do not do well with it. Again it is the process that I have to go through to get to my goal. Unfortunately there is no around or avoidance that will help this time.
I was told by a friend when this journey started that I should just write this off as a bad year. I never thought it would really take a year for just the treatments but we are already going on 8 months. I have learned a great deal this year as have those who surround me. I am much more appreciative of simple things and take very little for granted. I know how blessed I am with my family and friends and that their strength is essential to my survival. I know that my higher power really is in charge of what the outcome of this journey will be and so rather fighting against it, I have to take one step at a time and accept what is. My questions will never be answered and so I must just continue on the journey.
Hopefully today will be a quiet day. Time to think, meditate, and be grateful.
We spent a very rainy but relaxing weekend at the cape with Joshua, Shira, Rea, Shuie, and Yonah. It was great to see the kids and visit with them before the next few weeks unfold.
Tomorrow is a relaxing day, I think and then off the Sloan on Tuesday for the umbrella screen operation. This should be pretty easy and I will return home that night.
Taking things one day at a time is the only way I am going to survive the next three weeks. I cannot plan ahead or worry about what will be. I also find it difficult when others worry because it sets me off into areas of confusion, questioning, and insecurity. I have to be able to enter this next phase of treatment believing that all will go well. I have the best doctors and they know what they are doing. There are no guarantees for any of us and I have my buddy, Jan on the sidelines assuring me that he will help me in any way he can.
After a long drive home, I am planning to try to sleep in tomorrow morning. Wishing you health and serenity.