My journey from symptom to diagnosis took about 5 months. Here I will breakdown the process from month to month.
July
I had planned on getting fit. I had started nursing school in January, and I couldn’t ignore what I was learning about health, fitness, and disease. I wanted to work on getting myself healthy, fit, and to become a good living example for my future patients. My plan was to start on July 5th. Why would I want to miss out on the 4th of July food extravaganza?
I started my journey with altering my diet and exercise. My husband and I usually take our dog for a 3-5 mile hike every day, so to increase my cardio I started jogging with my dog on July 5th. I jogged a little more than half of my 3 mile trek. I was proud and excited so I went again the next day. On July 7th, I went again but noticed some mild pain in my left hip area halfway through my jog. After my jog I noticed an increase in pain for a while until after I sat down for a couple of hours. I decided that I did too much, too fast and took a break for a couple of days; however, the pain came back after I tried to run again.
I continued to do my daily walks with my husband but found I couldn’t do the usual distance. I started to have so much pain I began to limp all the time, so I went to urgent care on July 20th. The doctor determined that I just had an injury to my groin, gave me some pain meds and told me to stay off my leg as much as possible for four weeks. Even still, I didn’t get the feeling that the doctor was listening to me. I felt he trivialized my pain, but believing that the doctor was probably right I just went with it…kind of.
I wasn’t a good little patient. I had a fun filled trip to California a few days later, a trip to Vegas the weekend after that, and a cruise the first weekend of August. Trust me, I partied like a rock star and didn’t hold back. With that said…I was in a lot of pain!
While in Vegas, I was trying to get out of my friends car. My hip was hurting a lot from all the party time at night so I babied it during the day. I was using my right arm to support most of my weight to push myself out of the car. That was when I first felt pain in my right shoulder. After that, the pain remained in my shoulder but was not near as troublesome as my hip.
August
After the cruise, I decided it was time to get off my leg and let it heal. I spent a good portion of August babying my leg and shoulder when it hurt, only taking short walks or not walking at all. By the end of the month my leg and shoulder was starting to feel better. My husband and I decided to get back on track to get fit. We made plans to start doing CrossFit in September.
September
Husband and I started CrossFit on September 5th. It was our start week and we kicked our own butts, but there was still a lot of orientation and learning our limits and how to do things. The next week we picked it up and by the end of that week my pain in my hip and shoulder came back. I decided to stop doing the CrossFit. I thought I may not have given my injuries enough time to heal properly and I just needed more time. At this point, I was starting school the next week. My focus went from injury to school. I figured that I would just take it easy on my leg and arm for a while and see how it went.
October
Being a nursing student you have to go to clinicals. My clinicals started October 26th and I was still feeling pain. I wanted to give myself enough time to see the doctor and give myself time to heal and do whatever the doctor told me to do.
I went to my appointment on October 13th. At this time I couldn’t walk without limping, I had pain even at rest, and I couldn’t turn my leg in certain angles. The doctor told me to go back to the gym and do some of the very exercises I was doing that were causing me pain before. I was very frustrated with this doctor. I came for answers and I was told to workout??? It didn’t make sense. He didn’t even do a pain assessment on me and that is what I came in for. I decided to get a second opinion.
I went to my appointment on October 13th. At this time I couldn’t walk without limping, I had pain even at rest, and I couldn’t turn my leg in certain angles. The doctor told me to go back to the gym and do some of the very exercises I was doing that were causing me pain before. I was very frustrated with this doctor. I came for answers and I was told to workout??? It didn’t make sense. He didn’t even do a pain assessment on me and that is what I came in for. I decided to get a second opinion.
The next day I went back to urgent care. I waited for some time because I was so busy at school. It was October 20th. I had 6 days until clinicals and I was worried about being able to do what I needed to do. There were no appointment times for two weeks for a doctor, so I headed back to urgent care.
Finally I felt like someone was really listening to me about how much pain I was in. I didn’t get into my shoulder, because really I just wanted to be able to walk around and do my clinical tasks. He was the first doctor to do a full pain assessment on me and really look into what was going on. He diagnosed me with bursitis and tendonitis in my hip. He gave me a referral for a steroid shot in my hip, but it would be 3 weeks! I was going to have to deal with the pain especially since pain meds didn’t take my pain away.
November
November 8th I went to the orthopedic specialist to get my steroid shot. The doctor did an exam before giving me the shot and realized that I didn’t have bursitis or tendonitis and had me do x-rays. The x-rays came back inconclusive and he had me schedule a bone scan and more x-rays. My bone scan was scheduled for November 15th and a follow-up on the 21st.
November 21st came and the bone scan also came back inconclusive; however, they thought there may be a stress fracture or a condition called avascular necrosis. The x-rays did not seem to be much more helpful. They scheduled me for an MRI of my hip for the afternoon of November 23rd and another follow-up for the 28th.. I told the doctor about my shoulder and he did some physical tests and thought I tore my rotator cuff as well. He sent me to have x-rays of my shoulder. As long as the x-rays came back ok, I was to see an orthopedic surgeon to schedule for surgery. I was totally freaked. How was I going to get through school when I had to have surgery and go through recovery?
November 22rd will be a day I will never forget. I was at my mother-in-laws house. I had spent the night to spend time and quilt with her. It was kind of early in the morning and my phone rang. It was my primary care doctor. My x-ray of my shoulder came back abnormal. There was a thinning of my bone in my humerus bone. She scheduled me for an additional MRI, this time of my shoulder, a full body bone scan, and a bunch of lab work. The lab work was very scary because I am a phlebotomist and I didn’t know what most of the test were. They turned out to be tests for multiple myeloma, I looked them up in my nursing books later. The last thing she said was that she was consulting an oncologist.
I don’t know how to explain how or why, but at that moment I knew I had cancer. I didn’t know what kind, how, or why I had it. There were still many other things that it could have been, but something deep inside me felt the truth and it was undeniable for me. It was the weekend of Thanksgiving and they were scheduling all theses scans in a hurry. Everything became urgent. We decided to not tell most of the family until we had answers. There was no point in ruining Thanksgiving at this point.
The next week was a blur. I went to my MRI for my hip that afternoon, my full body bone scan the day after Thanksgiving, and my MRI for my shoulder the following day. I also received a phone call for an orthopedic specialist to make an appointment for the 30th. Thanksgiving was not a good distraction, and I was scared and worried the whole time.
Novemeber 28th came. The results of all my tests came back. I had no other areas of bone problems according to the bone scan; however, my MRI came back with results consistent with metastasis. For those who do not know, metastasis is when cancer spreads from the point of origin to another place in the body. I asked the doctor point blank, “So bottom line, you are telling me I have cancer?” He would only say that he is not saying that and I needed to see my primary care doctor. I was frustrated that he just wouldn’t say it.
This was when I called my mom and we decided that she was going to come to help take care of me. We picked her up at the airport the next day.
November 30th and it is my last day of clinicals and my appointment for the orthopedic specialist is scheduled for 1 hour before my clinicals start. It was in the same building and I didn’t expect anything from this appointment. Boy was I wrong, he was the first one to say outright that he thought I had lymphoma. He told me that my bone was on the verge of breaking and that I needed to be in a wheelchair. He scheduled a bone biopsy to get an official diagnosis, and yes there were still other things it could have been. He promised me that he would be with me until my bones were healthy again and became to first member of my cancer team.
At this point I was still alone in believing I had cancer. All of my family and friends were waiting for the final word…a real diagnosis. I felt very alone at this time. It was very hard.
December
December 2nd was the day I had my surgical bone biopsy. The bone did not look like what he thought it would. He said that there was a chance that it was a rare type of inflammatory response. It wasn’t, but it gave Husband and my mother hope that it was something else. It is the only thing I really wish hadn’t been said. All we could do now was wait until December 8th to get the results.
December 8th I met my oncologist for the for the first time, and we got the official diagnosis…diffuse large B cell lymphoma. Things moved quickly from that point on. The timeline went as follows…
December 12th – morning appointment with the orthopedic specialist, afternoon CT scan
December 13th – PET scan
December 14th – echocardiogram to ensure my heart can withstand chemo
December 22nd – surgical insertion of my portacath
December 23rd – my first chemo
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