Life has been chaotic here. I first want to thank each and every one of you for all the donations, love, and support. Honestly, I have to admit that I can’t get through without each and every one of you. I mean it from the bottom of my heart. I may not know many of you, but your support makes me fight everyday. Every donation has helped me tremendously. Every cent went to a medical bill or my medication. Having cancer is so expensive, which I’m sure you already knew. The stress gives me anxiety but I have learned to just let it go. I was told that even if I pay $10.00 or $20.00, the hospital can’t touch you or harass you. Finally some of the calls stopped.
As you all know, I was approved for medical cannabis almost a month ago. I started taking the oil which has a recommended dosage of 4x a day. After about a week I noticed I was in more pain than ever. I couldn’t sleep or function. All I knew how to do was eat like a dog, which isn’t good at all. We figured out I was given the incorrect oil. So of course I was very upset because at the end of the day I suffer, not the dispensary. Luckily, Nick gets paid this week. I am going to travel over an hour to get the correct oil I was supposed to get the first time. I am looking forward to this day. The Doctor was annoyed and did put a complaint in but again there’s nothing else they can do. The Dispensary does not care that if your sick, they just want your cash, hence why they don’t take credit cards.
This last month has been taking a toll on me. Back and forth to the cancer center weekly is mentally and physically draining. I should just live there. I am glad they do have a Ronald McDonald House for the little ones.
Nick and I are finally getting settled into our new place but since I can’t do much it’s so frustrating and exasperating. I have been falling a lot more than ever these days. I have always been an independent woman. My legs no longer want to cooperate. The nerve damage and peripheral neuropathy have gotten worse right after my surgery. Unfortunately, there is nothing the cancer center can do other than giving me pain medication, which I can’t tolerate.
Dealing with a new diagnosis of Anxiety and PTSD is not fun at all. I have breakdowns most of the day. I can’t breathe, which makes me feel like someone is choking me and then I panic. Listening to music helps calm me down. I started mediation for PTSD a few days ago. But, I have this really bad side effect in my mouth and it’s killing me. I don’t know what it is and it’s not a canker sore. This is going to take sometime to get used to. I am on temporary medication until the Doctor can get me into to see a specialist. Wait times is around 2-4 months. I need to be seen by a specialist for this and then a therapist.
I was advised to have a bone scan to check out why I am falling so much. The scan will be taking place next week sometime in between a million other Doctors appointments and the palliative care and the lymphedema specialist. I just have to find the energy and strength day by day to get up for each and every appointment. Having cancer is like a job. Doctor to Doctor. There’s no time for a real job. My job is to fight for my life every single day. Since my legs are weak, I was referred by the cancer center to have a home health aid come and help me a couple times a week due to the fact that when Nick is at work there are times I cannot get food, water, etc. It is so embarrassing to mention. Proper nutrition is important especially if I have to start Chemotherapy. Starving myself is something I am used to daily but I have to break out of this really bad habit, especially because of all the medical issues I have. When you’re not well your body just gets so exhausted. Everything I do from showering to putting on my clothes on my bed is exhausting. But, I STILL GET up and fight. I take my chair I go to the store. I take the bus to get to the appointments. I am still me at the end of the day even though I feel like I am a totally different person these days. It is hard to accept the fact that I need help. A lot of help. I don’t like help because I am independent. Nick yells at me on a daily basis because I try to sit and unload a box. Which, I know I physically can’t do on my own. Cooking is still a tremendous task for me. That’s where the aid will come in and help, I think.
The home health aid should be coming next week. I have to do a consultation first. I am not thrilled with this idea, especially being “young.” But, I know I need the help especially on my worst days when I can’t even get to the bathroom. The other day while Nick was at work I couldn’t get up to go the bathroom, which is so embarrassing to say. It took me over an hour to find strength to get to and from our bed to the bathroom which is now in our bedroom. It is only about ten feet away. It is upsetting to me that I am getting worse, not better. I try to take it day by day and just try to “relax” or “breathe” but god, it is easier said then done people.
Yesterday, I went to my first lymphedema appointment. First, my specialist measured my head and neck for the stocking. The stocking is for compression. It is supposed to alleviate pain over time. I have to wear the stocking 6 hours a day. Kinda crazy that I have to wear this while I am out on the go, which is pretty much everyday. I have places to go, things to do and I have no energy in me anymore. I also have to purchase silicone scar sheets. I was supposed to have this a few weeks ago but the secretary gave me the wrong information. I purchased a few different brands and nothing was working. My scar is 9 inches long so I must be able to cut the silicone and then place it on my entire scar. Finally, my lymphedema specialist massaged my neck and under my arms. It’s not a massage you would think of. We started with some exercises: Face to chin, left and right, hold for 30 seconds, etc. Then she massaged my neck and breast bone area to let the lymph nodes move. With the lymphatic system, you have to massage downwards. I couldn’t feel when she was massaging my neck or arm, which is expected. The massages are very uncomfortable. I was trying so hard to stay calm but with the anxiety and the tears kept coming, so we had to pause multiple times. It’s not easy for me to allow someone I don’t know, regardless if they are a specialist or not, to touch my neck. I have been dealing with this swelling for years. It’s so severe because I wasn’t treated properly in NY. Sloan Kettering should have taken care of this in 2012 but failed to do so. I am going to need 20 months of therapy. I already have 15 appointments scheduled because the Rehab office gets booked up quickly.
Next week after my massages, if I show her that I am wearing the silicone scar sheets daily, we can adjust the stocking if need be. Then she will put a heating pad on my neck and then drain some fluid using a needle. The thought of the needle going into my neck is not a pleasant thought at the moment, but I need relief. The fluid is so bad that I can barely sleep without choking and coughing. I am having difficultly doing a lot of simple tasks for example like reading. Because I have a huge chin right now due to the fluid, I cannot bend my neck down. I gasp for air and it’s quite scary too. I feel like I’m suffocating all day long.
Staying positive is hard especially with so much going on at once. I am grateful Nick was home yesterday because my transportation never showed. They decided not to call me and let me know. There is always something and more unnecessary stress which is uncalled for.
I can’t wait for this week to be over so I can get the new oil. I need relief ASAP. I am severely anemic so I will be doing an Iron infusion in about a week or so at the cancer center.
Once my anxiety is a little bit better, I will be starting TKI therapy, which is an inhibitor for Advanced ThyCa patients. I said no to external beam radiation because the radiation tech would have to drill with a screwdriver onto the machine so my head doesn’t move. No thanks! I will pass on this one. TKI unfortunately does NOT cure aggressive Thyroid Cancer. TKI is a chemotherapy drug which will make me very sick. I’m more concerned about my legs than vomiting. I can deal with vomiting because I am used to the nausea. That’s the easy part. Then, the loss of hair as well, which I don’t have to worry about. My medical team will not start me on chemo until my anxiety is better. Apparently, I am jumpy.
I have been through a lot of bullshit during the last 13 years being ill. Being ill for so long takes a toll not only on myself but for Nick and for my loved ones. It is rough.
Everyone tells me “I don’t know how you do it.” I get through this by powering through my days. I keep my mind focus on things that are important to me. I keep in touch with my babies who I miss dearly in NY (my nieces and nephews). At the end of the day, I am proving to them that if Aunt D can beat cancer (Ava knows I have cancer), WE CAN DO ANYTHING we set our minds too. Yes, this is so hard and exhausting but you have to be a role model for those little ones. Someone has to. I think of them often and I love all the pictures. Pictures of them cheer me up. I may not talk to them daily because they are so busy. But, I am always thinking of them. I don’t have a choice but to keep fighting for them.
Everyday, when I need to breathe, I just picture myself with a healthy body, running around, watching my babies grow up, and most of all taking all the pictures in the world. I would also travel to Italy. It is my dream!
In the next coming weeks I have about 15 different appointments. It’s insane. I have so much paper work that I can’t even keep up with the calendars they give me. I have to invest in a yearly book because I keep over lapping my appointments. Being sick like a job. Then in between the cancer cent
er, I have to see the specialist, an audiologist, I need a biopsy done of my ovaries, and then I see my surgeon again in May in between weekly appointments to the Rehab. I also have to find time for the bone scan then find time for PT to get my right arm back in motion. There are way too many appointments going on at once. I just have to take it day by day and try to keep these papers organized.