Saying goodbye to a patient pandemic style

Yesterday, I snuck onto one of the inpatient units to say goodbye to a patient and fellow breast cancer warrior . Hospitalization today is very different than it used to be because of covid 19 precautions. Patients have to make end of life decisions with family meetings held on zoom. This approach leaves out the important human touch of holding a persons hand and hugging them when they are forced to make the hardest decision of their lives. The decision to focus on comfort at the end of life instead of active treatment, The thing is that in most  cases, as  this case, the decision has already been made by your body that is no longer able to tolerate treatment. The difference is that now, the patient is left alone in that bed after the doctors and nurses walk out and the zoom meeting has ended. This is the part of the pandemic that many don't see or understand. 

Luckily I wear an employee badge and know how to make my way to the nursing unit. We are not really allowed to go see a friend in the hospital during the pandemic, but K has been my patient for the last 2 1/2 years. She is a beautiful 54 year old woman who until 2 1/2 years ago was living her normal life without concern for her health. She had a lump on her breast . She didn't think much of it until it started to cause some sores on her breast.  She actually had breast cancer that had spread to her skin and bones and eventually  spread to her liver. Sound familiar? Now, please, for those who love me and are reading this blog, don't panic and think that I'm writing this because I am dying. K's cancer was much more advanced than mine at diagnosis two years ago. The benefit of working as a breast cancer nurse is that I recognized my symptoms as abnormal a lot earlier. K is now in complete liver failure and waiting for  bed at the inpatient hospice unit. 

After a family meeting , on zoom.  I had the opportunity to go see her and hold her hand. I couldn't hug her, but holding her hand was the next best thing. I'm so lucky to have this opportunity to help her by allowing her to at least  see a familiar face , even with the face mask, goggles and gown she recognized me right away and was relieved to see someone she knew because even her oncologist was only able to participate in this discussion on zoom since she too is quarantined at home. My heart goes out to K and  and her family. Making the decision to change the focus to comfort care is hard enough when you have your family physically at your side, I cant imagine how much more difficult it is when the pandemic does not allow your family to physically be present. K is waiting for an open bed at the inpatient hospice center where her family will at least be able to have limited visitation. Tonight, I pray that K is comfortable and that a bed will become available at hospice for her soon. I did hear from her family that two family members, her son and sister,  were being allowed a 30 minute visit at the hospital today. Thank you lord for allowing her this opportunity to have them be able to get in today to hold her hand  and give her a hug, even if only 30 minutes. 

Saying goodbye to a dying patient has become even more difficult during the pandemic. 

K,,,and all those suffering alone in the hospital tonight, I pray for comfort, peace, and dignity. 

Linda (Idalina) 

I am and remain stronger than cancer 

Michelle: I will carry your purse with pride and remember your bravery.

Another Brave Warrior: I will carry my new purse with pride for the breast Cancer Warrior who owned it before me. 

 I recently was able to purchase this beautiful purse on ebay.  It belonged to a metastatic breast cancer warrior. I never met Michelle in person. I got to know her through a facebook group through Gloria Gemma Breast Cancer Foundation. This is a group of women all living with stage 4 metastatic Breast Cancer. It is a group  that no one wants to belong to, but those who belong are glad to have the support of others who understand what it is like to live with a terminal illness like this.  

I later learned that Michelle's paths crossed with others that I know. Its funny how you find these connections through social media. Through this beautiful young woman's posts and zoom chats through Gloria Gemma's straight truth meets, I was always so moved by this girls strength, beauty, smile, and courage. 

She stopped working after her diagnosis and did lots of fundraising in support of awareness for metastatic breast cancer. One of the organizations that she supported was Metavivor, an organization devoted to supporting those effected by metastatic breast cancer as well as focusing on research to find a cure. When I saw that her husband was selling all her beautiful handbags and wallets and donating the funds to Metavivor, I knew that I wanted to purchase one of her bags. It was great that the one I won the bid on was the one I loved the most. 

For many reasons, I will carry this purse with pride and will always remember how brave, and courageous this young women was. She was only 43 and left behind a little boy, but I know that she made a difference for her child, friends, family, and even those who never even met her in person. I watched in awe every time she posted about yet another challenge, progression, change in treatment, disappointment, excitement at any little progress and in the end her courage as she faced the end of the journey. Her husband then posted about her last days and her courage. I pray that I have many years before I get to the end of my journey, but when that time does come, I will remember Michelle and others before me who have been so strong. This young woman and so many others that I have had the pleasure of meeting show so much strength and dignity. Even in my line of work where I see so much strength, I still feel so motivated and thankful to meet these amazing people at a time where the courage and hope really shines through. 

Michelle...rest in peace, I will always remember your beautiful Portuguese smile.  

Idalina (Linda) 11/29/20

Learning to Dance in The Rain

 "Life Isn't about waiting for the storm to pass, it is about Learning to Dance in the Rain" 

I first heard this saying years ago from a young woman who was one of my leukemic bone marrow transplant patients. She was in her late 20's and had so much life to live, but she was dying from her cancer. She had every reason to hide under the blanket and get depressed, but she did NOT. She kept fighting until the last day and she was so strong. Even with every relapse, she stayed positive. I sat with her holding an ice pack to her nose as she bled from no platelets . I advocated to give her platelets to give her a few minutes without bleeding so that she could see the two young children (her boyfriends children, whom she had learned to love and who loved her).  Even in those last few days , she was positive and living life. She and so many other brave patients that I have been privileged to know have thought me to live my life by not waiting for the storm to pass, but to keep dancing in the rain. 

This year has been trying for all of us as we continue to navigate the storm known as covid. In addition to the covid pandemic, I have to navigate another storm again.  I must deal with a scary change in health. My breast cancer has decided that my liver is a warm place to spread to. My biopsy last week confirmed that the lesion in my liver that was seen on scans and MRI is definitely a progression of my breast cancer.  It is one lesion and I am waiting for an appointment for a procedure called cryo-ablation , which basically freezes the lesion and kills it, but this also means that my current treatment is no longer working well enough. so I got my first two big shots to the "Ass" this week; a hormone blocker called Faslodex.  I have given these injections so many times to my patients.  I hate given it because its two big needles, one to each side,  and the medication is almost like pushing cement through a needle . My thumb is always sore after pushing that plunger; however, I now know how the patient on the other side of that plunger really feels. "Ouch", that was not fun at all. It really did hurt; and the fact that two nurses, one on each side get to see my bare Ass was a little disturbing. I will be a little more sympathetic the next time I have to give it.

 I will be receiving this treatment again  two more times this month as a loading dose, then once a month. Here's to second line treatment for metastatic breast cancer. I got 22 months from first line, so lets keep fingers crossed for at least another 22 months for second line treatment. The good news is that there are still  many lines of treatment that I know will be available in the future so that I can keep dancing in the the Rain. 

I will keep pushing forward, Living my very best life and I will continue to push past the Storm and Dance in the Rain. 

 Linda (Idalina) 

Too small to Biopsy

 

                    

Freezing after Ativan Nap

Decisions, decisions....When it comes to cancer treatment, it is so important that the patient is at the center of decision making. I have always worked toward this model when advocating for my patients. However, as the patient, myself, I realize why some patients want the doctor to decide. what is the right choice? 

A liver biopsy would have confirmed that what we all know is cancer, is really cancer, but more importantly in my mind was that I wanted to make sure it was still the same type of breast cancer and not a more aggressive form. and  for genomic sequencing to see if I am eligible for a different pill. I guess it s good that there are so many reasons. However, none of it worked since the radiologist could not clearly identify the small lesion to make sure they put the biopsy needle in the correct place. For that  reason , we will wait to do an ablation. I am lucky that my oncologist is reachable and always willing to see me on short notice. Allen and  I met with her today and together, we have decided that this liver lesion is small, so we are going to take our chances and leave it alone for now. The treatment has been very effective on my cancer and even on this area that has been growing very slowly. So, we are not going to consider it progression. We will stay on course with current treatment with another scan in 9 weeks. 

I am both thankful and petrified , but I have faith and I am Stronger than Cancer....

Linda (Idalina)

Remain stronger than Cancer 

                                                          She said YES to the dress!!!

Now that I have my first progression since a metastatic breast cancer diagnosis, I find myself really thinking about the future and what this all means. As a oncology professional, I know that generally each line of treatment may last less time than the previous, but that's not so in all situations. So...I got 20 months out of first line and I plan on getting at least another 20 months out of this line of treatment. and if not, there will be other treatments waiting to be tried. In the meantime, Life is precious and I love my life. There are so many exciting things to look forward to. 

This weekend, my future daughter in law, Kayla, was so sweet and invited me to be part of her special day as she picked her wedding dress. It was so moving to be allowed to be part of this exciting day. This experience reminded me that I have such a beautiful life and so much more to look forward to. I cant wait to watch my son (my baby)  on April 24, 2021 when he sees his beautiful bride come down the isle in that beautiful dress. She is just beautiful. There will be many tears of joy. Then there will babies, They will be wonderful parents. I spent the night with them at their home in New Hampshire and as I sat watching them together, my heart was filled with joy and excitement for all the  love that they share and excitement and pride for what is yet to come. 

Then, there is my daughter and the love and support that I see from her husband and the pride that I feel when I see them caring for my beautiful grandchildren, I will be here to witness So much more, but regardless, I am proud of the part I have had in what they all have become. I made mistakes, none of us are perfect parents, but something went right.  I am so thankful that both of my children have found wonderful , caring partners. 

So, for those who are following my journey. I met with my oncologist on Wednesday. Together, we decided that I will stop my current treatment as it no longer working like it should. Time for second line....Faslodex (two big shots monthly.  Additionally, I will be having another consult visit with intervention radiologist on Tuesday to decide if it safe to biopsy my liver to see if I am eligible for another pill that is based on a specific genetic mutation on the cancer cell. If he is able to safely go into my liver, he can hopefully also do a procedure called cryo-ablation which basically means that they burn that little cancer lesion on my liver. Lets just burn that sucker right out of there. 

Thank you all my wonderful family, friends, and colleagues for all the support, thank you Kayla and Dennis for making my children so happy and I am also  thankful for your parents who raised you both to be such caring loving people.

 There is so much more to come. 

Linda (Idalina) 

Progression already? 

It's been a while since I blogged. Time to blog again as it helps to make sense of an unfair situation. 

When I was diagnosed with metastatic breast cancer in December, 2018, It was a world wind of emotions and decisions. I started therapy with Ibrance, letrazole, and zometa with the promise that Ibrance is well tolerated and had great results with improving progression free survival on average to 28 months. Well, here I am at 20 months and progression already.

I was sure that I would be one of those people who got 4 years plus out of first line treatment. No such luck, the dreadful progression to the liver is now here. Well, time for conversations about the next steps. Time to change therapy, sooner than I had hoped, but still so many options are available and I will persevere. Life is not fair, that is true, but it is so beautiful and so worth living. Wednesday will be the next oncology appointment. second line metastatic (stage 4 ) breast cancer treatment, I am ready for you. 

Idalina