Today, I started some of my drugs required in preparation for chemo tomorrow. I was given a calendar of drugs that I have to take before, during and after the chemo infusion. These drugs control nausea and vomiting and are the steroids. I have to say I am feeling pumped.
The side effects listed for the chemo drugs sound scary. It’s just like those commercials you see on TV and you wonder why the heck would anyone want to take that crap? Well some diseases give you good reasons. Cancer is one disease that makes you do crazy things. There are approximately 3.5 pages of side effects for each drug. For example, don’t eat grapefruit, starfruit and pomegranate or seville oranges while having chemo because they can increase side effects. I don’t even remember the last time I ate a starfruit. Now that I know I can’t have it, I kind of want to try it. I use to be a tester so wondering what would happen! Ok, no seville oranges, make me curious about clementines, tangerines and/or lemons? Well, needless to say I will be a good girl and try to avoid these things where possible. Truth be told when I was younger I actually had an allergy to oranges so no issue there.
Side effects include hair thinning and loss. That’s the one everyone knows and I still can’t picture that happening! As you know I already planned ahead and have some hairpieces lined up. I won’t be picking up the wig til about 14 days in when hair is expected to shed. If the one I want isn’t readily available, it may take 7 days to order and if that is the case, I can just get a head cozy. They sell gypsy fortune teller caps and maybe I can find my inner psychic if I wear one. Could be a new retirement gig for me?! Most of the side effects listed indicate to contact a doctor if you have no improvement or symptoms get severe. My medical oncologist told me if I remembered absolutely nothing during his consult, I must remember if I have fever of 38.3 degrees, to head straight to emergency. He emphasized, no question, fever, head to emergency! He said, “That’s it, that’s all”. Ok! Ok! I usually try to fight things off but apparently not in this case.
Most of the side effects that fall into that emergency room category have to do with unusual bleeding, bruising, liver problems, heart problems, blood clot, blocked intestines, severe pain in stomach, any allergic reaction like a severe rash, itchiness, swollen face, lip or tongue, chest or throat tightness. Phew!
They also suggest to change your toothbrush before you start because your immunity will be weak and you don’t want to pick up something off your old toothbrush. I have to watch for mouth sores. So basically if I break a toe nail, I am going to contemplate seeking medical help. Kidding but seriously a broken toe nail could lead to infection which could lead to an emergency. I am starting to think I have a fairly serious illness…… The treatment at this point feels worse than the disease but that is probably because if this disease spreads, it won’t end well.
Today is also the day I went to meet the Radiation Oncologist. Let me refer to her as Dr. Rad. Coincidentally, those are the last three letters of this Oncologist’s name. Dr. Rad was really nice. She said I would need 6 weeks of radiation. The debate NOW is whether I need to have more surgery to remove my axillary lymph nodes. Apparently this decision goes before some Doctor Review board to determine if it’s recommended. So I feel very special because a bunch of experts get into a room and review my case. All cancer patients are special because they actually do this for most if not all of their patients. The panel of doctors meet regularly to see how each patient progresses through treatment. This is very similar to project status meetings but the project is you! A successful project means the patient survives or lives on or in some cases is given extra precious time which may not have been possible.
Dr. Rad told me that if the cancer has extended passed the node more than 2 mm, surgery will be recommended. Given I reviewed my pathology report, I know mine is at 6 mm. I commented that the report indicated that the method of measurement of this extranodal extension can be fairly subjective. She confirmed that it isn’t easy to confirm the measurement once the node is removed. She did say the pathologist is part of that review board. I am thinking I could have given them a measuring tape in the operating room. Obviously, I told Dr. Rad that my preference would be to avoid this surgery if possible but I do need to hear what this panel recommends because they know the odds and stats. I do trust this lot of Doctors and I understand if breast cancer spreads to the organs, there is slim chance of survival past 5 years. My concern with the lymph node removal is around getting lymphedema.
Lymphedema occurs because without the lymph nodes, there isn’t normal lymph drainage. Fluid can build up in the affected arm. The swelling may be slight OR it can be great, so great that your arm can grow very large. In severe cases, lymphedema can cause pain and limit movement. I think it depends on the number of lymph nodes removed and no one person has the same number of lymph nodes under their arms. They already removed 5 and I have been good so far. Based on my understanding, Lymphedema can be triggered by a specific event out of the blue, such as overuse of or injury to the arm. If your lymphatic system can’t keep up, it may tip you into lymphedema. More blood means more fluid in the tissue.
This said, it can be managed to a degree and I guess I have to weigh the odds against whether it is better to manage a Popeye arm or being on the other side of the sod. I still have things to do, I have lists I have to complete. There is my “bucket” list, and I have to throw more onto the “fxck it” list…things to do! Look at your lists, suggest you add more to the “fxck it” list, it may reduce your stress. I have a long list of men on mine! Kidding of course.. Gosh, I hope my Mom and boys skip over that comment. Mike already scratched his name of that list..
Noteworthy, I received an email from Nancy, a dear dear friend, telling me that today has been designated as ‘World Lymphedema Day’ in many countries around the world including Canada. I am sure she would be okay with me sharing this information with my blog readers. Plus I plagiarized some of her words from her note below which I hope she sees as a form of flattery! She wrote a great email!
The purpose of the designation is to increase awareness, knowledge and support for lymphatic diseases.
This evening the CN tower will be illuminated in teal (the designated colour). The Canadian Falls are also being lit to recognize the day and the disease. Mayor John Tory has signed a proclamation making the day official in Toronto.
Nancy has Primary Lymphedema (the rarest form of LE) and it effects both of her legs but the most problematic is the right one. She shared that it took many tests, incorrect diagnoses, and years to actually be confirmed. Nancy is such a positive force and a trooper! She disguises her symptoms. She is completely mobile and stays very active. I can attest to her walking and walking very fast particularly on our Girl’s weekends away. She considers herself fortunate because although she suffers with occasional pain, she attended a conference a few years back and saw many people with multiple challenges. There is little attention or funding to help people with primary Lymphedema so Nancy and others are pretty much on their own.
Nancy, in the spirit of World Lymphedema Day, sent her email to raise awareness and sent the below link.
It has information on all the forms of Lymphatic Disease and a nice short video narrated by Kathy Bates, the actress. Kathy suffers from secondary lymphedema and has become a very active advocate for LE.
I hope some of you will take time to enhance your awareness by taking a look. I also have another good friend Irene who suffers from secondary lymphedema. So please read up on it.
https://lymphaticnetwork.org/wld/
In any event, if I do need axillary lymph node surgery, radiation comes last and only after I heal from surgery. I am starting to think this illness is much more serious than I think it is. This said, I am casting it out of my system! Out damn cancer, out!
Here’s to Chemo day! I was told I may crash after Chemo, so time will tell! Stay happy! Look at your to do list! And please read up on the lymphatic disease…
Til next blog!
