Journey ~ Something suggesting travel from one place to another.
And that it has been. I haven't posted since 2013, therefore, I'm going to share some of my medical history and what we've been through.
At the beginning of September of 2008, my husband's twin brother died in a car wreck. The same week is when I began noticing something was wrong in my body.
I'd been working as an RN at our neighboring hospital about two miles away from home. One morning, I told my eldest daughter to take me to the emergency room, "Something's wrong, I can hardly breath. I don't feel right." When we arrived at the front desk to give the receptionist my information, I almost passed out. I had to lean against the wall, so they took me directly to triage, my daughter along with me. As I was sitting there, I looked up at her and said, "I don't feel right." I could feel a sensation at the pit of my belly, like my spirit was about to leave my body. That's the only way I can describe it. I began to slide out of my chair, but the nurse started talking to me, trying to keep my attention. My blood was drawn for labs and vitals taken, then on to a room to wait for doctor's and lab results. My symptoms were shortness of breath, needing blood (hemoglobin and hematocrit was 5 & 15; EXTREMELY low), and pain started immediately. After I told them I felt a hard mass on my left side, they took me for a CT, which showed a 21cm spleen. (When I said that, the dr. looked at my husband, who said, "That's the first I hear of the hard mass!" Which was true; it really didn't seem important to me before). It still didn't occur to me about cancer, so when I saw my medical records and that they'd requested an oncologist, I'm like, "WHAT?!".
It took about a week, I believe, to receive my results after the spleen biopsy. So in September of 2008, I was diagnosed with Myelofibrosis, something I'd never heard of as a nurse. It's a quiet, chronic disease that you don't know you have until symptoms occur, which may be many years down the road. The bone marrow isn't able to produce blood cells due to an enemy called Jak-2. (It isn't genetic/hereditary and unaware of how a person gets it.) The spleen and or liver then begins to work harder to help to produce these cells, which causes the spleen/liver to enlarge. My spleen was pushing organs aside and pressing against my stomach, making my body think it wasn't hungry, or unable to put anything IN the stomach.
The oncologist I was assigned to was definitely not one of empathy. Altho I needed blood, often within the next few months, the only thing he really told me was that there was nothing he could do for me; "Do you understand? There's nothing I can do for you." The only reason I even heard about MD Anderson as a prospect was from the doctor on call. When I was at the neighboring hospital, again, to receive blood over night, the on call dr. said to me and my husband, "You do know about MD Anderson, that they have research medications for this disease?" No, we'd not been told that by anyone, especially my own oncologist. He gave us the information, said some have to wait to get in. I was very fortunate, I was accepted by Dr. V almost 2 weeks later.
We believe with all of our hearts that the Lord led us to MDA and to this particular doctor. He has saved my life several times, by providing the right research meds...Prognosis is usually 5 years by the time you're diagnosed, because you would have had it many years before symptoms occur. I'm still here ten years later, I KNOW it is due to the Lord bringing me to all the right doctors, etc. For the next several years, I went faithfully to MDA and performed all protocols they required; going every day for few weeks to every few days a week to now and then to once a month to supportive care to manage my pain.
The pain was all over, bones, mucles, joints,.....Took a long time to finally figure out what really worked for me, and that wasn't until July 2016. Prior, we just kept trying different meds. Took the edge off, but was never free from pain. One dr. said I had fibromyalgia, put me on certain meds for that. I lost a lot of weight initially, like a "medical anorexia". Couldn't eat anything in front of me, and I'd go to a restaurant and just go in the bathroom after looking at that wonderful food and just had NO appetite. Eventually I did gain weight and was able to eat, when a research med was working for me.
I went from research meds that worked for few years, to having to try a different one because it would stop working. The last one I was put on was in June/July 2016, and made me so sick, I had to quit taking it after just a few days. Or was it the spleen infarction from the enlarged spleen. Right after the last research meds I was on, a sharp pain, similar to the feeling of pleurisy in my left chest/shoulder are, l appeared like not being able to take a deep breath because of the pain. Later found out it was a spleen infarction.
I couldn't eat or drink, everything came up and along with any pills. I finally decided to go to the nearby hospital, where I used to work and had been several times (my main hospital is MD Anderson in Houston). I chose nearby because I felt so sick and I figured (wrongly) that they could do something for me. Never once was my MD doctor called, even tho we'd given them this information.
These doctors decided there was nothing they could do for me. Which was pretty much true. There isn't a cure for Myelofibrosis, and since I already knew that MDA had no more research meds for me to try, I said, "Then put me on hospice since there's nothing more that can be done for me. At least hospice can give me supportive care, pain meds as needed, etc."
My husband wasn't able to visit me much because he was at home sick and didn't want to get me sicker. I didn't even consider consulting him about hospice. I guess I knew it was up to me. When he came to see me, we talked about it, as he cried...When he left the room, he called my MDA doctor, who, come to find out, knew nothing about me even being in hospital. Doctor told him, "She's not SICK enough to die!! We can remove the spleen!" ( When I was first presented to MDA with this incurable disease, I was told removing my spleen wasn't an option; it wouldn't make me any better, and I needed my spleen to help generate (?) blood in the bone marrow. AND, the research meds WERE working prior, to reduce the size of the spleen, but would continue to fluctuate.) My husband said, "Well, you need to tell HER this!" He gave me his phone and I spoke to Dr. V, and I agreed to be transferred immediately to MDA for care.
That same night, I traveled in an ambulance from Cypress to downtown Houston on a hard gurney. I was still NPO (nothing by mouth), and I was craving, CRAVING, ice chips!! We arrived at the ER, I asked my paramedic to please give me a cup of ice chips. It was WONDERFUL!! I had to remain for quite some time there in a side room in ER until they could find a bed for me on a floor.
My next quest was to PLEASE give me something for pain. What I'd been on was NOT working. I had severe pain, with a spleen so large, I looked pregnant. I had pain to walk, so I stayed bedridden or in a recliner at home most of the time. Shortness of breath was the norm, especially on exertion. That was taken care of, minimally. And finally I ended up on the supportive care floor, only because that was all that was available (I was told) and a more comfortable bed.
I'll continue this another day....this is long enough for now....Want to get SOME thing on my blog today. Have a blessed day or night.
