Raising funds and awareness for MPN Blood Cancer Research through Jen Hawkins and her courageous journey and battle towards this very rare form of blood cancer.
Here's Jen's story in her words:
September is Blood Cancer awareness month and I have been struggling with telling my story, it has been weighing heavy on my heart. I prayed about it for awhile now and I have received my answer. I know that I need to tell it to do exactly that, raise awareness. This is going to be a long post, so bare with me. In January I went to my doctor (GP) because I had been feeling tired, lethargic, it was hard to wake up in the morning (which has NEVER been an issue with me, 4:30 AM was always my wake up time), I would get winded easy, it was hard to concentrate, it was hard to get through a workout and I also had some weird issues going on too like numbing of my extremities at random times etc. My doctor had me do a routine blood draw on a Friday morning and by 4:30 that afternoon I got a phone call from my doctor that I needed to go to the emergency room right away. My platelet count was 1.8 million and that I was at a fatal risk of clotting or stroke. Normal platelet counts are from 100K- 350K this was the beginning of a long journey for me that I will be on for the rest of my life.
From there, I was sent to a local hematologist (whom I had seen before in the past) as I have always had higher platelets that were monitored ranging from 400K-600K since I was 21. I have never really had a diagnosis at this point. I saw this local doctor until August 7th. With him, he put me on a low dose of oral Chemo (Hydrea) and instructed me to continue to take an aspirin a day and drink room temperature water. With the medication came even more side effects. I felt as if I had a 24/7 flu. Extreme headaches daily on top of my other symptoms. My menstrual cycles were awful and would make me so sick I either couldn’t get out of bed or would be sick to my stomach. I continued to see him for 8 months and just thought it was “normal” and I just dealt with it against my mother, mother in law and husbands questioning. I did not want anyone dwelling on me or what was going on so I became good at masking my feelings and symptoms. There were so many other people with real stuff going on and I was just going though something that would soon pass. I was with him for 8 months and during that time he increased my medication one time. I knew what my platelet counts were before he walked into the room and he never once put me as a priority or gave me answers. I called him 2 times when I couldn’t get out of bed and both times I was told to drink room temperature water. I finally got fed up and I wanted REAL answers and wanted to be treated like I was with a doctor who cared or eager to find out what was going on. My boss suggested asking my GP for a referral to a different Dr. that specialized in “blood disorders” and so I did and this changed EVERYTHING. I got the referral almost immediately to Seattle Cancer Care Alliance. They looked at my chart and got me in within 3 weeks (the wait is usually a lot longer). They pulled all of my medical history almost immediately, including 2 bone marrow biopsy’s, my ct scan, all my lab work, all of my scopes etc. I was placed with Dr. Halpern, one of 2 doctors in Seattle that specialize in rare blood disorders. A week before my appointment I was told that a panel of blood cancer doctors were looking at my charts, this was so reassuring to me. When I went to my appointment I had 2 pages of questions. She spent about 2 hours talking to us and answered most all of them. I FINALLY had a diagnosis. I have an MPN disorder which is a chronic slow growth blood cancer. I have a negative 3 mutation, meaning that they have not found or researched my mutation so there is not a clear path for treatment. She also told me that there is nothing that causes this; it is genetic but not hereditary. In the 5% of people who have this cancer, I am 3% of them. In her words I’m just “unlucky and really unlucky to also be a negative 3 mutation”. For now our goal is to get my platelets down as fast as possible. In the 8 months that I was with a local doctor, they fluctuated from 1.4 to 1.8 million. She also told me all of my symptoms are normal for this disorder. “AH-Ha moment” My platelets have been so high for so long that I have little cots all over that are restricting my blood flow to vital organs causing all of these bizarre symptoms. Do you know how good it felt to hear that I am not crazy and these symptoms are real!? I left that appointment with so much knowledge and reassurance but I also left with the diagnosis of Chromic Blood cancer – meaning I will have it for the rest of my life. Dr. Halprens plan of attack was to get my platelets lowered as aggressively as possible. We need to get them under 1 million to take some of my clotting and stroke risk factors away and she said that once they are much lower for awhile my symptoms will get better, never go away but more manageable. She is going to work with my GP here to do bi-weekly blood draws and I also had a bunch of other tests done while I was there. They also took 2 giant containers of my blood just for research, which I thought was AWESOME! Since seeing my new doctor, who is amazing and attentive, I began taking a much higher dose of oral chemo along with some other supplements. At this point my platelets went from 1.5 to 1.1 million… in 2 weeks! This was HUGE!! But also along with the higher dose of medication, my immune system has been compromised. I have been at the doctors (GP) at least 2 times a week in the last month. Sinus infection, 2 double ear infections, ruptured ear drum, 2 bouts of a stomach bug, a potassium/ kidney failure scare and 4 new medications along with some other TMI stuff. When I write it all down it seems like a lot but to me I am just fine, living my life every day, just a slightly different life than before. I feel as if I need to acknowledge and embrace the negative because that is the path to balance in my life. It has gotten to be a joke that I am the hot mess express, just waiting for something else to happen. This week I had another of my bi-weekly blood draws and I am back up to almost 1.3 million… UGH! I have now started the highest dose I have ever been on of the oral chemo praying that it will work! Not many people know my story, just family and some close friends. I have an amazing support team and I am so thankful for them. It is so hard for me to ask for help or be helped because I am the one who does the helping. That, I think has been the hardest part, letting go of things and accepting help or saying no. I get worn out pretty easily and if I over do it, I get sick, so my lifestyle has changed (for now). I get a lot of people that say “you don’t look sick” or ‘I couldn’t even tell” and yes because I am not sick, I just have a new battle in my life that is changing me slightly. I am still me, I am still positive (most days) happy and goofy. I still love people and love to socialize. I don’t look any different and I am not. This is not my life, but just a small part of it. I do not want sympathy or made to look weak, because I am not. I will ask, if you want to pray, please pray for a cure and for my family. For those of you who made it to the end, you now know my story. If there is any interest, I am happy to keep you updated now that the “cats out of the bag”. Please feel free to ask me questions and I will try and answer to the best of my ability, but there is so much grey area and unknown still. This is the just start to my blood cancer story to make you all aware that blood cancer is close to home for me. I will either update you all here or on another page, I have not yet decided…..Stay tuned.
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