Mom had her second session of chemo round 5 last week Wednesday. I wish I can say the last week was easy but it wasn't. She's been in really rough shape. I haven't seen her this bad for quite some time. She's so fatigued to the point anytime she stands up, she feels like she's going to collapse and pass out. She's also not been able to eat for the past few days and she said that she's been feeling stomach pains again. She hadn't felt that for awhile now. I can see that she's just tired of all this and is really questioning to keep on fighting the good fight. I keep telling her that we'll take one day at a time and I will go along with anything she decides. She's been talking about hospices again and as hard as it is for me to accept that facet of this, I have to do what's right by her. We're meeting the palliative specialist later this week to talk about it.
The past few weeks I've also been consumed with research and clinical trials. I managed to convince Dr. A to send out mom's tumor tissue to get tested for a specific protein that I've been reading about. I came to know about it through some amazing people I've been who are also fighting the good fight. They are my cancer warriors and fellow caregivers.
The test examines mom's tumors for a specific protein. If she's tested positive for this specific protein, she can enter clinical trials with drugs that target and kill that protein in the tumor.But, she has to be positive for the specific protein makeup aka bio-marker. Chances of her being positive are extremely low from what I've been told. But, I am hoping...I am always hoping. I am not willing to throw in the towel quite yet. I need to know that when this is all said and done, that I can look in the mirror and tell myself that I've done everything possible that I could have done.
Tuesday, September 25, 2012
Monday, September 17, 2012
Chemo Round 5 - Session 1
It's been quite an interesting week and I'm a little behind on updates. I've been meaning to write all week but sometimes, I just don't feel like talking about cancer.
On Wednesday, mom started a new round of chemo. We were at the clinic longer than expected because they wanted to run additional blood tests. The reason for the additional blood tests is because Tuesday morning, we had a scare which led me to believe that mom had some internal bleeding of the tumor or elsewhere. It was a side effect of the blood thinner lovenox. As soon as I suspected, I called the doctor's office and explained her symptoms. I was on the phone quite a bit Tuesday afternoon dealing with it. The doctor said that since it was just an isolated incident and mom was doing ok for the most part, that he'd order a INR test to monitor how the blood thinner is working. It's all such a fine delicate line...the blood thinner used to help the blood clot, but a symptom of that is that it can cause internal bleeding. Apart of me feels like if something sudden were to happen to mom as a result of these side effects that I'd blame myself. Mom relies heavily on my opinions (always has) when it comes to her medical treatment. All I know is that the decisions I've been making is something I would do if I were in the position. It's not so much that I am bombarding her with meds out of selfishness to save her no matter what the costs are.
Then on Friday, things just got bad. Not with mom but with me. While taking a shower before work, I slipped and fell in the bathtub and threw my back out completely. I layed there in so much pain and couldn't even move an inch. Luckily my husband was home! I was so frustrated that it happened. I had to burn valuable sick time because I literally could not move more than a few inches with feeling excruciating pain. I felt like someone snapped my tailbone in half like a twig. That afternoon, I went to my chiro and got an adjustment. He gave me a back brace and told me to ice, and rest it all weekend. I was pretty much ordered to stay in bed all weekend which I did. I remember laying there so upset and feeling completely useless. This was not happening. I had things to do for mom and had to take care of her! Every effort I made to try and push through the pain failed. I finally told myself to just rest. It was the best thing I could for myself and for mom.
On Wednesday, mom started a new round of chemo. We were at the clinic longer than expected because they wanted to run additional blood tests. The reason for the additional blood tests is because Tuesday morning, we had a scare which led me to believe that mom had some internal bleeding of the tumor or elsewhere. It was a side effect of the blood thinner lovenox. As soon as I suspected, I called the doctor's office and explained her symptoms. I was on the phone quite a bit Tuesday afternoon dealing with it. The doctor said that since it was just an isolated incident and mom was doing ok for the most part, that he'd order a INR test to monitor how the blood thinner is working. It's all such a fine delicate line...the blood thinner used to help the blood clot, but a symptom of that is that it can cause internal bleeding. Apart of me feels like if something sudden were to happen to mom as a result of these side effects that I'd blame myself. Mom relies heavily on my opinions (always has) when it comes to her medical treatment. All I know is that the decisions I've been making is something I would do if I were in the position. It's not so much that I am bombarding her with meds out of selfishness to save her no matter what the costs are.
Then on Friday, things just got bad. Not with mom but with me. While taking a shower before work, I slipped and fell in the bathtub and threw my back out completely. I layed there in so much pain and couldn't even move an inch. Luckily my husband was home! I was so frustrated that it happened. I had to burn valuable sick time because I literally could not move more than a few inches with feeling excruciating pain. I felt like someone snapped my tailbone in half like a twig. That afternoon, I went to my chiro and got an adjustment. He gave me a back brace and told me to ice, and rest it all weekend. I was pretty much ordered to stay in bed all weekend which I did. I remember laying there so upset and feeling completely useless. This was not happening. I had things to do for mom and had to take care of her! Every effort I made to try and push through the pain failed. I finally told myself to just rest. It was the best thing I could for myself and for mom.
Monday, September 10, 2012
Skol Vikes!
I also took the opportunity to get as much food into her as possible in gearing up for the next round of chemo. I gave her toast, some fresh peach and chamomile tea with almond milk in the morning; organic fruit salad and a chicken wing for lunch; and leftover mostaccioli with beef meatballs for dinner. It was small amounts, but I was happy she was eating. I'll take anything I can get. I apologize for not returning many calls or emails; I just needed time to think about things and really focus on mom.
Yesterday, we watched opening day of Vikings regular season football. It was great. We cuddled up under the blankets with the doggies. It brought back lots of memories watching games with her. I remember years ago teaching her how scoring worked after Rajen taught me. Ever since then, she's been a die hard fan like me. We cheered, yelled and enjoyed one heck of a football game. Go Vikes!
Saturday, September 8, 2012
Mixed News
After meeting Dr. A's nurse and going over all the details of giving mom her lovenox shot for her blood clot, we waited for Dr. A. We waited close to an hour but we didn't care. We were fortunate for him to see us on such short notice.
Dr. A came in the room and started to tell us the details from the radiologist report. He told us that it seemed that the chemo wasn't working because the tumors got larger. Our hearts sank. He started to tell mom about a clinical trial that's being conducted at Mayo that might be a possibility going forward. He also said that if mom didn't wanted to do that option, that it might be a good idea to look into homecare palliative options and hospices.
He asked mom how she was feeling and she opened up how better she was feeling the past month. She told him that she had no stomach pain anymore where it once hurt, no chest pain and she could actually eat a little now too. I intervened and confirmed that since starting this new chemo, she's overall been doing better. Outside of the chemo symptoms, things have been ok. Dr. A said it didn't make sense and then proceeded to look at the actual scans and not just the radiologist report. He pull measurements from the tumor growths but he indicated that from those numbers, the increase wasn't significant.
He ended up going into another room and projecting the scans even bigger. He compared the first, second and third (current) scan. He asked me to look at it with him. As we reviewed and talked about the scans, we noticed between scan 1 and 2, mom's prognosis had significantly gotten worse. There was spreading to more lymph notes, and in the chest area. But,when we looked at the difference between the 2nd and the current scan we took that day, we observed very little growth. In fact, one of the tumors near the esophagus seemed a bit smaller. There was no additional metastasis that he could see. I was pretty candid with him and said, "it seems to me that this chemo is making an impact somehow, it's keeping the cancer in check". He told me that he wanted to speak to the radiologist and get this all figured out. He'd call me as soon as he can.
We left the clinic with a lot of uncertainty and about 10 minutes later, Dr. A called me. He said after speaking with the radiologist, that one tumor increased by 10% (if that). He said that there was no spreading either which was very good news. He said typically oncologists will state a chemo isn't working if increase of cancer is 25% or more. And this wasn't the case in our situation. Before he hung up the phone, he personally thanked me for making him look at this in greater detail.
I told mom the semi-good news as we drove home. I joked with her on how she's so special that throughout this whole process, she makes all these doctors look at things more than once and even have to retest. We laughed together.
Friday, September 7, 2012
My New Normal
What a day! I'm simply just exhausted with a day filled with ups, downs and more questions.
Woke up at around 5:00 a.m. Both mom and I had to get ready and mom also had to drink her radioactive cocktail for her CT scan at 6:45 a.m. We arrived at the hospital around 6:30 a.m, got registered, filled out paperwork and then waited. We were the first to arrive so it didn't take long for them to call her back. Mom went in at around 6:50 a.m. and the scan itself just took around 15 minutes.
Once mom was done, I dropped mom off at her place and then went to work. My mind wandered about what these results would show and how much it would suck waiting until next Thursday to find out results (the next time we met Dr. A). My stomach felt like a bottomless pit.
At around 11:30 a.m., my phone vibrated. It was Dr. A's office calling. My heart sank as I answered the call. It was Dr. A's nurse and she said that mom's scan came back and Dr. A reviewed it quickly. The scan showed that mom had a blood clot in her chest and they wanted her to be admitted to get it taken care of asap. She said she'd set up the orders but to prepare to come in this afternoon. She also said that the cancer shows that it spread to some more lymph nodes and the cancer progressed a bit on the new chemo regime. I tried to get more answers but she didn't know for sure but she'd arrange for Dr. A to meet with us to discuss the results.
I called mom and filled her in. She took the news as best as she could. She was at least thankful to get news back so quickly. I told her to pack an overnight bag just in case they wanted her admitted into the hospital. Since Stan was nearby mom's place, I called him to pick her up and give her a ride to our place until we knew more from the clinic. At around 1:15 p.m, the nurse called back and confirmed she set everything up and for us to come in at 3:00 p.m. Before coming in though, she had put in a prescription at the nearby hospital for us to pick up and bring with us. It was for blood thinner injections and she wanted to train me on how to administer the shots.
We arrived at the clinic with injections in hand and met with the nurse. She showed me how to correctly give mom the blood thinner injections. I was a bit scared to jab this needle into mom's belly and cause her pain but I knew it had to be done. So, I had to suck it up and just do it. And, I did and it went fine. Mom even commented on how proud she was of me for doing all this medical stuff. Her telling me that, made me look back at myself and see how far I've personally come from just a few months ago. Who knew I had the strength in me to do all this? To be constantly thrown in a whirlwind on decisions, all the learning, training and research, being on top of every symptom, drug, treatment etc. I sit back and close my eyes and think how much my life has changed to a "new normal" since May.
To Be Continued....Meeting Dr. A and discussing the CT scan results and what it all means.
Tuesday, September 4, 2012
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