All posts by debbi

Awakened with a Smile

After a long night and many decisions about whether or not to take me to the hospital again (I was running a high fever), we decided to stay at home and give me Tylenol. My temperature is normal this morning, and when I awoke these two beautiful smiles awaited me at the door: my baby, Rea’s, and her baby, Yonah’s. Yonah is continually digging for teeth, which still have not made an appearance. 

We got a very special surprise yesterday. Somehow, my sister is going to make a 23-hour trek from FL to PA and rest at my father’s house. Then, my brother, his family, my dad and my sister all plan to make the 6-hour trek to Cape Cod to see me. This is the first time my siblings and I will be all together in 15 years.

It is essential at this point for me to take my meds, eat properly and sleep as much as possible. 

Rea was supposed to spend Passover at her in-laws but has presently opted to stay with me this year, considering the circumstances. So if all goes well, we will be having a very large Passover Seder here at the Cape. We thought it was only going to be me and Jan!

I was fortunate to have my cousins Beth and Teri come and visit yesterday. They walked in with a HUGE bouquet of Hydrangeas (which everyone knows is my favorite). Rea and the baby and I spent a lovely afternoon in the big, four-poster bed with them, just enjoying each other’s company. Teri’s daughter, Alissa, is celebrating her bat-mitzvah this Saturday. We have plans to go, but as the week wears on, we will see if that is possible. 

Today we expect our cousin Evelyn, the Visiting Nurse Association and the cleaning crew from yesterday to complete the Spring Cleaning of this house. Already it looks dust- and cobweb-free. 

For Today I’m grateful that I woke up out here at the Cape, that I have so much company and that I am going to rest the day away to regain my strength.

And the Journey Slows Down

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. 

I’ve Moved

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. 

Keep praying.

***My number in Cape Cod: (508) 385-6273

FINALLY HOME

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

BACK AT SLOAN

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.

Growing Harder

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.

SUNNY DAY

I am so thankful it is a sunny day. It has been a long long night, up every hour and so I am glad it is morning.
I am taking it easy today. The chemo is getting a little more difficult and I am feeling tired and light headed. I think I am heading back to bed.
I am expecting visitors today and hopefully after a nap, I will be able to enjoy their company. I am also hoping to get outside and feel the sun on my face for at least a little while.
I am grateful for such a beautiful day and that this is the last chemo for this series so next week is off. Time for sleep.

ONE YEAR LATER

I had a very tearful discussion with Dr. Roth yesterday about how it feels to hit this one year anniversary of diagnosis. In many ways I am grateful that I have survived to this date considering all the surgeries, blood transfusions, chemo, and hospital stays. But I also assumed I would be in remission by now, back to work, and gain some of my independence. This is not happening and I do not know what the future holds (that is true for us all). And so we talked for my entire hour about why this is happening. Dr Roth is quite pleased on how I have emotionally handled this journey, always trying to find something positive, trying to hold on to some semblance of my life and trying to stay out of the dark places. He also sees that I have very high expectations for myself and those too have had to be altered. THIS is where my emotions go crazy and where my life becomes difficult. I have had to lower my expectations, and I have, but sometimes they need to be really lowered (like sleeping for a whole day). This is when I tell him I am falling apart but he says I am not really. I must go back to the word ACCEPTANCE. I am really happy to have him in my life now since he is helping me see that I am doing the best job I can under the circumstances.
Chemo went fine yesterday. It is so amazing for me to get up the next morning and be able to eat and walk over to PT. This is great and I am hoping I will continue this way thoughout the treatments. (High Expectation?)
I will nap this afternoon and then Theda will come and knit with me. The rectangles are ready for strip 6 of our afghan. We are really getting quite close. Eight more rectangles to knit and then complete the sewing together. We are going to try to spruce it up a little since I really am not fond of the color combination so maybe an edge or some design on the corners of the rectangles will make it more palatable for me.
Right now I am hitting the showers to get my day rolling. I still need breakfast before I can take my meds and then get to PT by 9:00. I move a little slower than before but such is life. At least today I have one.

ANOTHER DAY AT SLOAN

Yesterday I met with Dr. Healy who checked on my progress. He hinted that we may need to do more in the future but for right now, I need to go through the chemo. I cannot imagine having surgery in that shoulder again. Such Pain! But I also said I would never go to chemo either.
On the way out of the doctors, I called PT and they squeezed me in. Dr. Ralph brought in some videos for me to watch. One was South Park. I told him I was almost divorced over that movie when Jan watched it with the kids in a hotel when they were much younger. I thought the kids should not be watching it and they watched it anyway. Now it seems so minimal; then so huge.
Today I will go see Dr Roth, the psychiatrist, but I have not compiled all of your ideas yet. There is no due date but I will inform him of how many of you responded. After this appointment I hope to go to chemo unless Dr. Bajorin thinks I am not well enough. This cough just persists. I would really like to just go back to bed. I will this afternoon.
Today I am grateful That I have made it through this year. A year ago today, I was diagnosed with cancer and this journey really began. It has been a nightmare overall but there are many things I have learned, there is more that I appreciate, there is so much that doesn’t really matter and I can let it go, there are so many wonderful, caring, giving people out there, and I am thankful for each and every day that I wake up and can still do many things. I keep looking for the tiny miracles and they do show up in the strangest places. Today I am praying that I can see my health taking some steps forward on on the road to recovery.

VERY VERY TIRED

I spent the night in Urgent Care because the cough will not stop and I was running fever. They took another chest x-ray and compared it to Tuesday and said there was no change. They were concerned because my creatinine level keeps rising. This is an indicator that my remaining kidney may be having some difficulty. It never ends. So they gave me some IV fluids and sent me home and I am still coughing!
On my way out of the hospital, at 3:00 AM, I ran into my favorite nurse, Tulsi. She is adorable and it was so nice to see her.
The good thing is that I am due in xray at 9:00 this morning on my shoulder since I am meeting Dr. Healey at 9:15. The technition agreed to take those xrays last night also when it wasn’t busy so I can go directly to the doctor. That saves so much time.
I had planned to try to drive today but it is a raining day mixed with snow. My errands are not that important and so they can wait.
I guess today will be a catch up on sleep day. I don’t know how Jan is going to fare on 2 hours of sleep but he will never complain. He is the main reason why I don’t like to go to Urgent Care. I can sleep there, he has to sit in a chair and talks to the staff.
So very tired and going to take a rest stop on this journey today. It is just getting to be too much for right now.
I am grateful that I went to Urgent Care and it was empty last night so no waiting. I am grateful that I am awake and able to go back to the hospital this morning for my appointment. I am also grateful that it is a rainy day and I am going to spend it in bed. I am praying that somehow the doctors can keep my body intact while killing these cancer cells. My immune system is so weakened that I really am not fighting back and for that I will pray hard.
Enjoy the rain, at least it is warmer.