What can be said at a time like this? We suddenly become aware that every moment is even more precious than we believed. The biopsy, as Debbi wrote, was positive for cancer, and Dr. David Lovett informed us that it is now more important to fight the infection than it is to subject Debbi to further chemo which will weaken her further and might allow the infection to take over.
It takes a while to get used to the idea but Debbi seemed comfortable with Dr. Lovett’s explanation. Dr. Lovett examined the results of the scans and studied the treatment summary that I prepared for him. He spent time reviewing the documents that had been sent from Sloan Kettering and even dashed back to his office to take another look at the view of the lungs in the most current of the 12 CDs I had retrieved from Sloan’s film library. After he had assimilated all possible info, he bluntly asked Debbi, “What would you do from here?” He was giving Debbi the choice of pursuing further chemotherapy or accepting Hospice, palliative care, and fighting the infection that is still causing her to expel green tinged sputum.
Within the blink of an eye, Debbi requested the Hospice route and working on fighting the infection. Dr. Lovett then related that he had read a study from England describing the benefits of fighting infection over pursuing chemo at junctions similar to this. To this end, Dr. Lovett modified her antibiotic regimen and also modified her pain medications to try to keep Debbi out of pain or to at least bring the pain down to manageable levels.
So, for the time being we are not focused on the cancer at all. Instead, we are watching Debbi’s temperature, hoping the excess fluid in her legs will be excreted via the Lasix medication, and placing her in an environment where she wont be alone. Alone is an understatement. Rea, Shuie, and Yonah were joined by Sima Ellie and Huvie and myself. Despite the din, Debbi was able to sleep when she needed to. Rest and sleep allow Debbi to be pain free and build strength.
We sincerely hope that the Cape environment will speed Debbi along to a stronger, pain free, and infection free state where she can enjoy her loving family, her devoted friends, and her prized hydrangeas for many months to come.
Yesterday, Jan and I met with Dr. Lovett and after detailing all the options, we have been told that the #1 priority right now is to get my body back in shape and to be pain-free. Even if there is a chemo to treat this specific cancer, I am physically not strong enough to handle another round right now.
I asked the doctor what we’re going to do and he plans to have visiting nurses here in my home to continue the antibiotic treatment so that I can relax and enjoy the quality of my life. I asked Dr. Lovett how long he thought that would be: “Two weeks?”. And he said, “I think we can do that”. And then I asked him, “Two months?”. He said, “I can’t promise you that. But some people have surprised us”.
I am so appreciative of all the prayers, support, kindness and caring that have been shown to me along the way, but I really am very very tired.
As you have read, this journey has become quite arduous. We have had to make many decisions about my future and we are still awaiting what will happen to me.
Jan decided to take me to the place I love the most and to have a new set of eyes look at my medical records. We have made the move to Cape Cod and our big, beautiful home with light flowing in the windows. I will be under the care of my daughter, Rea, her husband, Shuie and baby Yonah Tuesdays, Wednesdays and Thursdays and Jan will be here Friday through Monday.
Tomorrow, I will meet with Dr. David Lovett to decide if there is a treatment for me and if not, what my future will be and how we will handle it.
I spend my days sleeping a lot. My coordination is not what it used to be, so Rea has taken over the duties of typing the blog as I dictate.
Thank you so much for all your prayers, as I pray for all of you. Know that our higher power is in control here and what will be will be.
***My number in Cape Cod: (508) 385-6273
I am now home from the hospital after an 11 day stay. Jan has kept up the blog as much as possible since I was asleep a lot of the time spent there. I did have the biopsy after all and should find out results today or tomorrow. We are praying that those strange cells are not cancer and that there is still a treatment for the spiculated cells in the lungs.
In the meantime, Jan has decided we need a new set of eyes to look at mu medical treatment and I need a new change of scenery. Therefore, I have an appointment with Dr. Davis Lovett in Hyannis who heads up their cancer and hospice centers. He trained at Sloan and is a colleague and friend of Dr. Bajorin. I need to move to the cape to be closer to my children and to see my grandson grow.
I am very very weak and can only walk around on these swollen feet a very short time. So I am trying to pack in short spirts and am having some success with that and lying down in between. Now I will hwad for a nap and start the process again later.
Tonight our granddaughters will be dropped off and Jan and I will take them to the cape early tomorrow morning (4:00AM) wrapped in their blankets for a snooze to the Cap
Dr. Bajorin’s team just left. They reported that Debbi’s response to all the antibiotics was positive and therefore concluded that the encapsulated nodules that showed some changes between the CT scans of 3/13 and 3/18 were most likely due to infection. This does not mean the Debbi’s lungs are cancer free… unfortunately. But, it does mean that she will be transitioning to oral atibiotics, being released from the hospital in a day or two, and continuing with her chemo treatments for the spiculated cells that are still in her lungs.
On two occasions I was able to view the CT scans with a Fellow from Debbi’s primary team. The spiculated cells look like 100 individual grains of rice that are well disbursed in a set of lungs whose volume could probably hold at least 100,000 grains of rice. In addition, on both scans, there was an area that looked like a dime sized black circle encapsulated by a ring of white tissue. This area appeared to be a nodule that could be cancer, infection, fungus, etc. This nodule was not present on CT scans before the 13th but Debbi’s lungs did have an area which lead the doctors to believe she had pneumonia. Given the ratio of the 100 spiculated cells to the possible volume of 100,000, it is no wonder that the doctors always commented that they thought that Debbi’s lungs sounded surprisingly clear.
Dr. Michael Glickman of the Infectious Disease department speculated on Wednesday the 18th that the pneumonia or some infection had manifested itself in this encapsulated nodule and was slowly responding to the antibiotics. He said that this had no bearing on the cancer already in her lungs (which we are identifying as the spiculated (spikey) cells or “grains” of rice, rather these spiculated cells were still present but the bigger nodule, he believed, was due to infection.
We are praying that Dr. Glickman is exactly correct and that the spiculated cells do not morph into structures that look like the nodule I saw on the scan. Hopefully this will mean that the Taxol chemotherapy can still be effective and that we will enjoy and cherish having Debbi with us for much longer.
This visit to the hospital did have one distressing side effect that we are still dealing with. Debbi is quite filled with liquid. Her lower half looks like someone hooked up a garden hose and pumped her full of fluid. Debbi’s medical record indicates that she is allergic to Sulfa drugs. Lasix is the most common diuretic and it is not known to harm kidneys but it does have the Sulfa molecule. The doctor were reluctant to prescribe it. Debbi was insistent so yesterday a single small dose of Lasix was administered with a side of Benedryl in case of an allergic reaction. Debbi seems to be tolerating the Lasix and we are waiting for a dose today. It is readily apparent that she needs this. Even though she describes the pain of being “water-logged’ I can not imagine it. It looks so painful. We went for a 3 lap walk around the floor yesterday and it just looked difficult. I brought well-cushioned summer flip-flops for her today and I am hoping that she will be able to complete more laps and that the exercise, Lasix, and who knows what will remove the excess water weight soon.
So there is definitely a lot to be thankful for today.
A week has passed and I am still at Sloan in Isolation. The doctors have been running and rerunning tests to determine what is in my lungs. The anti-biotics are running into my veins continually and so the fever has finally broken, the cough has subsided and I am grateful for both of those changes. But we still do not know what is is the lungs. The choices are: Bacteria, TB (which I think is ruled out since my arm did not show any rising where they put the serum) fungal infection or cancer. On Monday they will perform a biopsy on my lung so we will hopefullly have an answer by Tuesday or Wednesday as to why I have been and am so sick. I am also retaining ridiculous amounts of water from my thighs to my toes which makes it more difficult to walk. I feel like a seal with flippers.
Isolation had not been that bad. I have a very large,private room with a place for Jan to sleep and do his work and for me to sleep,read, and knit. Everyone has to wear a mask, gown, or gloves around me so I really do not know how anyone looks. I really don’t leave to room unless I need to walk laps. Then I must get all the garb on in order to leave and go out into the hall.
The journey has become very very rocky at this point. My life feels like it is swinging on a pendulum. I have to wait for answers to very important questions and I thought all I had was pnuemonia or bronchitis. And we shall wait.
All I think about all day are my kids. I saw Rea and Shuie last weekend and Yonah, Simi and Huvi and that was a gift. I am hoping, once I am out of isolation, tha I can spend time with each of them. I think I may be heading to the Cape after we know what we are working with here.
I am grateful to be here at Sloan and being cared for medically an emotionally. I am also grateful for this private room. I am also grateful that I feel well enough to write on the blog. But I am especially grateful for all of your prayers and good wishes for my recovery. I can’t promise anything but I am really doing my part and working hard at it. The rest is up to my higher power and that I have no control over.
Wishing you a healthy and stress-free weekend.
Sorry for not having blogged in a few days.
Debbi seems to be responding to the antibiotics but not at the rate the doctors expected. The plan now is to perform a biopsy to investigate the nodules in Debbi’s lungs to determine their nature and to use this information to try to discern the source of the infection that causes Debbi’s fever to spike periodically. Since we have been here we have noticed that the fevers have become less frequent and less in magnitude.
One of the frustrations of trying to determine the source is that a significant tool in the doctor’s investigative toolkit is the blood culture. A sample of blood is drawn but then it must age in its prepared medium for several days until it can be analyzed. Therefore, we are only now finding out about cultures from blood samples drawn this past Sunday.
Additionally, the CT scan, which is the best scan for the nodules we are seeing in Debbi’s lungs, can not differentiate between nodules that are due to cancer and nodules that are due to infection.
Thus, the biopsy is the tool we are now dependent upon and we are certainly joining all of you in praying for a good result.
As you read from Jan’s entry, I am now a resident at Sloan for a few days. Whatever it is I have has not been determined but the high fevers persist and the chough hurts.I am also frustrated because I had my first blood transfusion since we started this chemo cycle. I thought I was past all this but I guess we are going down the same path as the last chemo when I had 11 blood transfusions!
I have been put in isolation until they can figure out what is happening. We have a huge private room with a bed for Jan also an of course no roommate. There are advantages to being contageous.
I am very very tired so I am heading back to sleep.
Debbi ran a fever on Friday just before Shabbos. We came to Urgent Care and Debbi was checked for pneumonia. The CT scan showed negative but Debbi was still running a fever. We were sent home but after Shabbos the fever returned. Debbi was running a 101.0 and under the rules of operation, we were directed back to Urgent Care. Urgent Care evaluated the situation, checked the CT scan from Friday, and admitted Debbi.
A doctor from the team stopped by this morning and we are trying to figure out what is happening. We are waiting for results of several blood cultures to determine if we are dealing with an infection, viral pneumonia, etc. Debbi is in some pain and is again getting frustrated waiting for the lab, the doctors, but most of all … just to feel better.
This round of chemo is a little more difficult than the last 4. I am in more pain and exhausted. I do a couple of things and I need to sit down. I was hoping for an easier ride this time but it seems that again the chemo is cummulative and I am ready to go back to bed.
I was so lucky yesterday. My friends from Caldwell, Nanci and Bonnie came with my sister-in-law Renee and my niece, Elli and brought lunch and their many stories. It was a pleasure to have them here but once they left, I slept for 3 hours.
Today I have to get ready for Shabbat dinner and more company. All three of my grandchildren will be here for the weekend. So I am going to PT, getting groceries, and climbing back into bed to rest up before they arrive. This is the way of life for me to be able to enjoy events. I must sleep between to have enough strength to participate in these activities.
Praying for a relaxing, and enjoyable weekend. I am grateful that my family is coming to visit and I am awake and ready to enjoy them.