|Posted on October 12, 2010 at 1:07 PM|
I haven't written an entry for a while since I have not been feeling that well. This is going to be a quick update as I am weak.
As I have mentioned before, I have trouble swallowing which has been caused by all the chemotherapy and radiation that gave me acid reflux. I have had several endoscopies and the last one in March, showed I have an ulcer at the top of my esophagus and one at the bottom. I took some medication for a period of time, it didn't resolve it completely, but I just tried to eat and drink what I could even though it hurt. To take just a small sip of water is even hard to get down. Between having severe acid reflux and oral gvhd, my choices of food is pretty small. I usually have a supplemental Boost for breakfast/lunch and then a small dinner and of course a dessert of some sort. The foods I always loved I can no longer eat.
Two weeks ago I felt like I had a sore throat. I do get these off and on, but this one lingered. It felt like a huge lump and I could barely swallow my own saliva. I went to the cancer center and was put on an antibiotic of levaquin liquid, this was in case it was a virus. Since I wasn't able to eat or even get fluid in, I had a few days of hydration in the treatment room. My lump didn't get any better, and I was still unable to eat or drink. Dr. Hedlund referred me to see an ENT (ears, nose and throat) doctor. He put a tube up my nose and looked into my throat but didn't see any irritation like a sore throat. He suggested that I should have a feeding tube because I am malnourished, not getting in enough calories to sustain me. I have lost 4 pounds thus far. He called my oncologist and I was directly admitted to the hospital.
I had an endoscopy on Saturday and then was sent over for a cat scan of my neck and chest. They haven't gotten the results back of the biopsies. However, the pictures of my esophagus showed a VERY large ulcer at the top of my esophagus. It is like a half moon and that is the reason why I can barely swallow. Also, my esophagus is very tight. He believes this is from the GVHD as well. I have seen the GI doctor and he wants to see what the results of the biopsies are, but it looks like I will be getting a PEG tube by the end of the week. You can do a search for PEG tube to see what it looks like and what it does. Basically it bypasses the mouth and esophagus. A G-tube (gastrostomy tube) is what will go into my stomach. If you go to www.Ross.com this will give you information on the formulas that will go into my stomach tube to give me nutrition. Of course I am nervous, since I haven't had this before. Also because one of the very few things that I am still able to enjoy is going to dinner with my parents every so often. It is nice to be in a different environment and to be out of the four walls of the house. It is going to be a very big adjustment.
Also, as I have said before, my veins have never been good for getting IV access. Since all of the chemotherapy I have had, it made my veins even worse. Every time I need a blood draw or hydration, I end up getting poked by several people many different times. My arms are all bruised again and I have had three IVs in 5 days. All have been taken out. This morning Dr. Hedlund came in to tell me that I would be getting a mediport placed in my chest again. The ports have come a long way since the last one I had. It is much smaller and plastic. I was sent down to radiation today around 2pm. They only give you sedation, so I was awake. It was painful as the surgeon pushed the port into place. I am in pain and can't move my neck much. This will subside within the next few days. At least I am now hooked up to IV hydration again getting much needed fluids.
My favorite CNA gave me a nice shower this evening and gave me heated blankets to crawl into my bed with. I have been given some pamphlets on the tube feed and of course it doesn't look like it's going to be that easy. I know though that I shall get through this too.
It just seems like it is one organ or body part after another. My breathing and coughing have been worse over the past couple of months. I haven't gone many places. Since the beginning of August I have laid low at the house. I was able to be attend my good friends, Jamie & Tim's magical day. They married on a perfectly sunny day and her loving family helped me to be so comfortable. On the other hand, my most valued friend that has stayed by my side throughout all of my illness, moved across the country. I do miss her, but I want her to be happy and to LIVE. If I was in her place I would be making choices just like her. So even though we are thousands of miles apart, we are still connected by our hearts.
Well, I thought this was going to be a quick update but it has now turned out to be a long one. I started it around 1 or so and had to stop several times. It is now almost 8:30pm. I wanted to add that I have been seeing an ophthalmologist for my ocular gvhd. I have mentioned how I no longer produce tears, have blurry vision, and have extreme sensitivity to light or TV. I saw the eye doctor and he suggested putting in silicone plugs in my lower tear ducts. These act like a plug in a drain. Tears come from near the upper eyelashes and run out of the ducts. The plugs will try to keep whatever tears are produced inside my eyes. I had these before when I was going to Mass Eye & Ear in Boston, MA. Unfortunately, these only irritated my eyes. I went back and he took those plugs out and cauterized my lower ducts. Yes, he burned them permanently closed. He first stuck needles into my ducts filled with lidocaine. Then he took the tool to cauterize and it smelled like burning. It didn't feel that great at all. Next he put silicone plugs in my upper ducts. If it still doesn't give me enough of wetness, he is going to cauterize my uppers. If that still doesn't help he will have to do eyelid surgery, which he said is very rare. He does say that my eyes are extremely dry. I am still having blurry vision and they are very sore when I wake up after sleeping.
Well from oncologists to pulmonologists to ophthalmologists to endocrinologists to cardiologists. Yes, I am now seeing a cardiologist. I have had heart palpitations off and on as long as I can remember. I do have a slight heart murmur but nothing major. As of the past month or so I have noticed more often than not palpitations with times of skipping beats. I have had to wear a heart monitor for the past two weeks. Each time I felt a palpitation I had to push the record button and enter into a journal what time/date, symptom, and activity. I am scheduled next week for an echocardiogram and then they will print out my results of the monitor to see what is going on. Hopefully it is nothing major.
So that is ALL that has been going on the past couple months. I don't get on the computer much anymore. If you write to me and I don't get right back, it is because I don't check my email every day. I will get back to you and I still REALLY would love to hear from you all. I haven't had many guestbook entries. I need some support of some sort. I am trying to keep on going just day by day. Sometimes those days are just really hard to get through. Then when I think about all my body has gone through and continues to go through I get so overwhelmed. The cancer floor here is my home away from home. I much prefer my other home though. The home that has my bed, my favorite stuffed animals, my clothes, shoes, pictures and parents.
I do have some friends that are sick, one who was newly diagnosed with AML and Sammi (the most amazing 13 year old in the world!) along with some others online that I have followed for a few years now. Please send prayers to them.
The world is not perfect, people are not perfect. I love my family and my friends. I am just really trying to focus on myself and I don't have energy for much else. I am exhausted. I have been burned again just when I thought I had found a great, honest friend. Life is full of lessons, some good, some bad. They say it makes us stronger. I guess I am more strong-minded, but my heart aches. All I want is peace. No more lying, no more arguing. Love is all we need. Love is all I want and nothing more. I love my parents, sister and brother-in-law and Godson. You are my family through thick and thin.