Waiting With the Butterflies

Mom starts systemic Chemotherapy this week, on Thursday at 8 am. It will be given to her through an IV, please see the previous post for details. 

She has been experiencing pain and is still coughing. During certain parts of the day she won't feel well, then at other parts of the day she will have a boost of energy and feel more like her old self. She said that the radiation should be hitting her soon, so she will be in a lot more pain fairly soon. She knows that it will get worse before it gets better. I've been lucky to catch her during the parts of the day that she's feeling well. 

One thing that keeps Mom's spirits up is butterflies. They remind her of her mother, my nana, because when she was younger Nana would always have nylon butterflies clipped to her kitchen windows;
every time she sees a butterfly she feels like her mother is with her. This is interesting because it is said that when you see a blue butterfly that means the Blessed Mother is there. It is also said that when you see a butterfly, the spirit of a passed loved one has come to be with you and watch over you.
Butterflies also represent change and grace. A butterfly is a symbol of faith, the acceptance of the butterfly's metamorphosis is symbolic of faith because it is symbolizing that we keep our faith as we undergo transitions in our own lives. Butterflies also represent hope and beauty, because as the caterpillar goes through this change it results in beauty, this I believe, is relevant to Mom, because Mom's body is going through intense change, but there is the hope she will always be the same, and she will come back to be beautiful and strong once again, as her spirit has continued to be thus far. 

As I said, butterflies are a symbol of hope, since I've been in North Carolina I've seen dozens of beautiful butterflies everyday. A sign I believe that not only is there hope, but that she is not alone because she has people watching over her from heaven as she has all of us watching over her here.

What Comes Next...

Mom had her last treatment of Radiation yesterday, so we are happy that's over because we are closer to her recovery. She has been very positive through the entire process and we are all so proud of her, the strength she has and the good faith she has kept thus far. The next step is to start chemo on Thursday once every three weeks; since her cancer is stage 4 she will be given systemic chemo so that it reaches all the other parts of her body that were affected.

Thanks to Silvia and her careful note-taking we have some details what Mom will be getting in the coming weeks:

• Chemotherapy - Pemetrexed (Altima) 15 min drip and Carboplatin (Paraplatin) 45-60 min drip - given IV over 2 to 3 hours in the clinic, once per three weeks.
• After the second cycle, a repeat CT scan will be done to see if the treatment is working (i.e. tumor shrinkage)
• These drugs are less toxic agent than others and are effective
• In order to start this, Phyllis had to receive a Vitamin B12 shot and start taking folic acid.
• The drug kills cancerous cells, but also hits the bone marrow. So, the B12/folic acid helps the bone marrow. The B12 takes a week to be effective. Hence, the soonest start date is Thursday 8/1/13 at 8 AM.
• Phyllis will also take a steroid orally on Wed, Thurs (day of therapy) and Friday. This will help the drug be absorbed more readily by the cancerous cells.
• Phyllis had her baseline blood counts. All looked within normal limits, a tad on the low side for Hemoglobin and Hematocrit.
• Side effects (not everyone gets these)
• Early:
• nausea - medication will be given to help curtail this. Along with the chemotherapeutic drugs, Phyllis will receive a 'medical mix' to help combat certain symptoms.
• allergic reaction - rash, breathing, pain
• fatigue
• Later (7-14 days post treatment):
• The drug will hit the bone marrow (bone marrow suppression) and potential side effects include lowering of the WBC's (helps fight infections) and of the platelets (involved with blood clotting). Blood tests will be done periodically to monitor cell counts (a CBC)
• mouth sores
• numbness, tingling sensation to finger tips and feet (nerves may be affected)
• Dr. Huberman mentioned several medicines that would be available to Phyllis to help with any side effects. Some of these will be in the medical mix given prior to the chemo drug.
• She will also be given a medication to help combat osteoporosis. When the bone and surrounding bone tissue have cancerous cells/lesions growing, the bone becomes more fragile. This medication (I did not get the name) will help strengthen the bone.
• Phyllis needs to wear her neck brace riding in the car or if her body gets bounced around unexpectedly. She is fine without it at home while resting.

Thanks Silvia!

Mom and Dad are in New Hampshire right now relaxing, they drove up Thursday night. Mom has been in a lot of pain, but they said the pain would get worse before it got better. She has been very tired from radiation, but she is very strong and as long as she eats well, sleeps well, drinks plenty of water and spends time with family she will do fine with chemo and the rest of this process. The doctors were more than approving when she mentioned going to New Hampshire because she is supposed to do things that make her happy. Silvia drove up last night. I talked to Mom last night and she said if she drinks anymore water she'll float down the river then laughed, well at least she's still in high spirits! 

If anyone would like to send Mom a message, feel free to leave a comment below! :)

Just a Few Words

As you can see, I've changed the title of this blog from "Mom's Battle: Lung Cancer" to "Our Journey to Strength". While I think the previous title was relevant, I think this title is more appropriate. My aunt Leslie made a very good point about the word "battle" being a negative connotation. I couldn't help but agree with that. Together we came up with "Our Journey to Strength", I think it better suits my blog and the situation because during these times it's really something that affects all of us. Like Mom, we all need to stay positive and strong because she will pick up on the energy of those around her. A positive outlook can do nothing but help.
I also read that when a loved one is living with cancer, it is always better to use words like "we" and "us" rather than "you" this helps the person gain strength because they are reminded that they are not alone in this. My mom is definitely not alone, she has the most loving support team behind her. Just a few words can make all the difference in times like these.

If anyone would like to send Mom a special message, please feel free to leave comments below. It would definitely help her feel better, and she would love it. :)

Day 4 of Radiation

Today is Mom's fourth day in Radiation, almost! She's doing well, very tired, in some pain still, and her voice is going a little raspy, but that is to be expected. She has a meeting with her Hematology Oncologist tomorrow to talk about starting Chemotherapy next week. 
I've been in North Carolina since Monday, and I miss her, but I talk to her every day, and I can tell she is not feeling too great because she doesn't like to stay on the phone long, she seems like she just wants to rest and sleep. She sleeps in the middle of the day, but she needs a lot of rest to fight through everything she going through. She is in radiation right now, she is doing so well, and she is being so strong, we all know she will get through this. 

I Love My Mom

I love my mom, and finding out this has honestly been so surreal. You don't realize how much someone impacts you or your life until something like this happens. I mean, my mom brought me into this world, so that alone is a pretty big impact I think. I guess I've been trying to be so strong this entire time, I've accepted that she has cancer, and pretty bad cancer, but I haven't been as emotional as most people would be I guess. I know that she needs all the positive energy she can get to make it through this, and that is exactly what I hope I have been giving her. She really is an amazing person who does not deserve this to happen in her life. It's been such an eye-opener I think for all of us. Maybe I haven't been so emotional because I know she's going to pull through and be fine. I know she is. She's a tough cookie.

Even though everyone keeps telling me that she will be fine and that they have all this new technology out there, well to be honest, in the beginning it wasn't about that. It was about wrapping my brain around the fact that for the next year my mom is going to suffer. That she's going to be in pain. I understand that they have all these ways of taking care of cancer, but it's not about that, it's about someone who's been there for me my entire life, looking out for me, taking care of me no matter what stupid things I did, who has loved me unconditionally, is now going to suffer immensely. It's all just really devastating. People die from cancer everyday. That's the scariest thought. It just hurts. I could never picture her not being in our lives anymore. She was always there. In the big plan of my life, she was always there, and we aren't going to let this ruin our plans.

Now I've been able to see through all the morbid thoughts, the only way to get through this is to believe and hope with everything I have that she will be okay, because now, there's no way she can't be okay; because I believe... I know, she will be fine. I love my mom.

The Results

This passed Thursday (July 18th) we had a scheduled consultation with Mom's doctors to hear the official results. Everything Dr. Folch had told me prior, was confirmed on Thursday. Mom was diagnosed with Stage 4 Adenocarcinoma. A non-small cell cancer, which is slow growing. Unfortunately it was Stage 4, meaning it spread to other parts of her body. One of the places was her spine which rose more concern from the doctors, and us as well. They wanted to schedule an MRI to her spine ASAP. Dr. Berman, her Radiology Oncologist was able to schedule her in for the same night at 8:15 pm that night, fortunately. The next morning we were to go in to talk to him about the MRI and to get ready for her first Radiation treatment. We found out that the lesions on her spine were on her C-5 and C-7 but were not affecting the spinal cord. She started Radiation yesterday (Friday) and she is scheduled for 4 more treatments this week, Monday-Thursday. She's doing okay, emotional at times, but we will all get through this with her. The coming weeks and months will definitely be tough. After this week she will begin Chemotherapy. We are fortunate to have a FANTASTIC medical team, so we can make sure she gets the best treatment. Her team cares about her, it's easy to see, they are very genuine and are making it all about Mom. 

The Beginning

Life is an interesting concept to reflect on. When you think about it, life is really just a journey in simple terms; a very complex journey however. Throughout this journey we hit bumps in the road and will inevitably experience hard times. It is with the strength we have and the strength of our families and friends and faith that carry us through these hardships. 

For a long time my mother had a cough that would not go away. She started to get sick more frequently, when she was originally never the type to get sick. The cough started during Thanksgiving of 2012 and continued through the winter and spring and is still being dealt with. The doctors thought it was Pneumonia, but when nothing changed she was sent to a pulmonary specialist, who told her to get a CT scan. 

I went with her to Beth Israel Hospital in Boston, she had the CT scan done and the same night Mom received a call from her doctors with bad news.

In the CT scan they said they found a tumor. They started scheduling tests, July 9th she had to have a Pulmonary Function Test, an MRI on her brain, Pre-admitions Test, and a PET Scan. Then Friday, July 12th she had a Bronchoscopy Procedure. Finally on July 18th we would find out the results and figure out what to do next.

The reality of it was that she had a tumor in her lung, it is either benign (not cancerous) or it was going to be cancer. 

On Friday, July 12th, I waited with Mom for seven hours to have her surgery done, with a combination of emergencies which extended our wait time, her pain and the anticipation of what the results might be, we were both very anxious and aggravated. She was very uncomfortable. It broke my heart to have to watch her in such discomfort for so long. When they finally took her into surgery at 3:00 pm, I decided to take the opportunity to get a cup of tea, when I came back time seemed to fly because next thing I knew I was being called into a room to speak with Dr. Folch. In this conference I was alone, surprised and anxious. I didn't expect to be consulted by her doctor.

Dr. Folch was very nice, but he had bad news. He told me that he sampled two lymph nodes that were affected by the tumor, and found atypical cells, he said he believed them to be malignant (cancerous). He said he also saw narrowing in her right bronchial tube which is the same lung that has the tumor, we found out that the tumor was in fact, outside of the bronchial tube. Dr. Folch said he wants to go in with a laser and burn away the narrowing, and place a stent in if it is needed. He also said that Chemotherapy and Radiation will be the best treatment for her. I asked him how sure he was about Mom having cancer, he told me 95%. Sounded like he was sure enough. After that meeting I left to call my dad, and we would have to wait another week to hear the official results.