Imagine living everyday wondering if every little ache and pain is normal or cancer.
- My cancer riddled body is full of aches and pains. Some new, some old. Some from my new medicine, some from cancer, some from getting older. Every little pain, headache, cramp; I wonder if its normal or from my disease.
Imagine the medicine that is being pumped into your body making you so sick but you have to tolerate and put your best foot forward in hopes that it kills the cancer.
- The other day while getting my radioactive injection for my bone scan I laughed as the nurse had so much protective gear on to handle this injection and then the vial comes through a secret insulated door in the wall and then in a heavily insulated tube b/c the people handling this vial need to be protected from what is in the vial. The the nurse takes the vial and injects the contents right into my body. The irony huh!!
- My new trial med made me very very sick for almost two weeks during the first round. The second round came with two very rough days and then tolerable side effects so I was happy with that.
Imagine waking up in a foreign country not being able to see while on a much needed vacation. Imagine trying to keep it all together in an effort to not scare your family. Imagine still making it a good day for your kids and having fun so they don’t remember this from this trip.
- I woke up in Aruba on day two of our trip not able to see. I have worn glasses all day everyday of my life since I was 8 years old. When I put my glasses on that morning I could not see a thing. All was a blur. Without the glasses, I could see enough to get around but all was blurry and at night the lights looked like a million fireworks going on. Sounds fun right, a fireworks show every night- trust me it is not. I spent the better part of the day talking with my medical team trying to figure out what was going on and how to handle it. (This issue with the eyes is a know issue and I receive many eye drops while I am receiving my infusion (and for a week after) and I also have to keep cold compresses on my eyes for two hours while I receive the infusion.) Bottom line I needed medical attention ASAP and on a Sunday in Aruba there were not many options and I wanted to avoid the emergency room at all costs. We waited until Monday morning and I was seen at urgent care, ,was given some medication and was told by my Boston doctors that I could remain in Aruba and we will see what happens to my eyesight within the next couple of days. The rest of the trip was nerve wracking and Trevor and I were on edge in regards to this. I kept wondering if we were going to have to go home early, if I was going to go blind or if this would resolve. The medical care in Aruba was fantastic and I was astonished to see the the same medicine I get here with medical insurance was a fraction of the cost in Aruba without insurance and that the eye exam I received was completely free!!! Do better America, do better!!
Imagine leaving a family vacation with a lump in your throat knowing that the odds of you returning to your favorite island with your kids is very very slim. Knowing that the next time they come will most likely be without you.
- This happens to me all the time. I always wonder- Will this be my last Christmas? My last vacation? The last of my kids birthdays? These thoughts have been a constant since I was diagnosed and thankfully I have been able to do and experience so much over the years.
Imagine having your whole world revolve around your cancer.
- Lately and I think probably as things get harder my life will start to revolve more and more around my cancer. More appointments, canceling plans b/c of my chemo schedule, missing things for the kids because of being at DFCI or not feeling well. This past week I could not drive or do much so my independence was ripped from me and I had to rely on many people to help me or take me places. I am so thankful for everyone’s help and how quickly this in my life jumped into action.
Imagine receiving good news about your recent scans but being so numb to this life with cancer that you can’t even get that excited about it.
- I had scans on Monday and the scans showed that this medicine is working for me. All of my liver lesions have shrunk, the lymph nodes in my chest have shrunk and there was even a decrease in disease in the affected areas in my bones! This news is amazing and the results we have seen from a medicine in a really long time. This is exciting and I am so thankful that the medicine worked but it is hard for me to jump for joy. That may seem weird but these results came at a huge cost for me. My eyesight and the degree of sickness that this med caused me was really hard for me. Mentally and physically. I also know through experience, that this was one good result. We take it and hope for more good news but I am not cured just more time was bought. I hope I do not sound ungrateful, but this is not enough for me anymore. I go through so much, so much that I don’t even share or let anyone really see, and I need more I want this disease gone and I would give ANYTHING not to have to do this anymore and to be healthy.
- Right now my eyesight is starting to resolve and I am seeing another eye specialist this morning. If my eyesight resolves and the severe neuropathy that I have been having gets better with the medicine I just started, then I will start back on the trial meds next week with a reduced dose. Scary b/c I really hope that the reduced dose continues to work and does not affect my eyes in the same way. Fingers crossed.
I know that a lot of this stuff is so hard to imagine for many but this is my life. The last six months of my life have been very very hard. I continue to try to move forward in a positive fashion but it is really hard getting knocked down so many times and dealing with so much. I am tired but still hopeful.