I’ve wanted to write this post for many months, but every time I felt ready to do it something new happened.
I feel like I need to explain to you what happened in my life and why I suddenly stop blogging without giving you an explanation. As you can see on my blog I took some weeks off between January and March. My original idea was to take the last days of January and first week of February off because I was travelling to Florida for my sister wedding. I was also going with my niece and was planning to take her to Disney World. It was her first time going to the States and I wanted to give her all the attention she needed. I have planned to go back to blogging as soon as I was back home. The wedding and the Disney trip happened as I planned, but couple of days before returning home my mom started to feel ill. When we saw that we decided (DH and I) that I should stay longer with my family until my mom’s illness was resolved. DH returned home with our niece and I stayed in Florida. That was the best decision I made because a week later we had to hospitalize my mom. Things got very complicated health wise for my mom and she ended up staying almost 3 weeks in the hospital.
When she was finally discharged, she was discharged under my care. The first days were very difficult, she was barely able to walk, even less take care of herself. I became her caregiver 24/7. My sister was a great support, but she was not only newly wedded, she’s the one always taking care of my mom. It was my turn to step up. My mom started to recover slowly. I tried going back to blogging in March, but I didn’t have much time to read and blogging became harder and harder. I decided not to force myself and take the time I needed.
Finally, after three months away, I came back home in April.
DH had a small surgery 10 days later. It was something he had planned for February, but had to postpone because I had to stay with my family.
Here comes a part I wasn’t sure if to share or not with you, but I decided I should, my reasoning will be in the last paragraph of this long post, by the way, sorry for it to be so long.
When DH had his first control after his surgery I asked his doctor for a reference to an internal medicine doctor. I had some swollen lymph nodes on my neck and wanted to have them check. I was planning to do it later because they weren’t bothering me and I was tired of doctors and hospitals; but DH was adamant and made me see the doctor we were referred to that same day.
I have to go back in time for you to understand better. In March last year I noticed a little ball in my groin, I thought it was a hernia due to lifting weights. I went to a doctor to have it check; he told me it was a swollen lymph node, most probably from an infection. After the check up he realized I had the lymph nodes of both sides of my groin swollen, but left side was more noticeable. He prescribed antibiotics and told me if they didn’t go away I should come back for more tests. Wit the antibiotics they diminished in size, but didn’t go away, so I went back and had an ultrasound and some blood tests done. Ultrasound showed the swollen lymph (1 cm on the left side), but it didn’t look bad. Blood tests were perfect. Doctor told me that sometimes after an infection it takes some time for the lymph nodes to go back to normal size, that I just needed to watch them and to come back if I saw any difference in them. Months pass, they went back to the bigger size and I could feel couple more, but I thought it was normal because at the same time I started to have joint aches as well. I have family history of rheumatoid arthritis and thought the lymph nodes were a symptom that I was suffering from RA (RA sometimes causes inflammation of lymph nodes). I thought it was something I need to learn to live with and didn’t pay them much attention afterwards. But this year, in January, I noticed two lymph nodes on my neck and knew I had to have them check because it was a bit too much to have them in my groin and now also in my neck; but that was before I travelled to Florida and with everything that happened with my mom I forgot about them. I was only able to go see the doctor on April 29th, which was the day DH has his surgery control, the day that despise his post-surgery discomfort and pain he waited with me for couple of hours until we were able to see the doctor we had been referred by his doctor.
I asked his doctor for a referral to a different doctor because I wasn’t too happy with the doctor I first saw. I liked this new doctor better; I felt he checked me well. He ordered pelvic and neck ultrasounds and lots of blood tests. I got my blood tests done that same day and had the ultrasounds the following Monday. My blood tests came back fine, but the ultrasounds results weren’t good. The day of the ultrasound the technician started on my pelvis (as it was ordered) and ended up checking me up to my chest. When she started to ask me to lift my shirt a bit more and a bit more, I knew something was wrong. She gave me the results right away and told me to see my doctor immediately. She had called him and he was waiting for me. When the doctor saw my results he asked me if I could have surgery the next day, he told me he wanted to get the biggest lymph node from my groin removed (7 cm) to send it to pathology. I told him I couldn’t next day; DH was still recovering from his surgery. I needed more days. Surgery was performed the following Saturday. It went well, but doctor ended up removing 5 lymph nodes. By then, our fears were almost confirmed; my issues weren’t the infection I was hoping to have. A week later pathology results came back and I got diagnosed with Follicular (Non-Hodgkin’s) Lymphoma grade 2.
After getting the biopsy results I went to see a hematologist (lymphoma is cancer of the blood). He ordered more blood tests and a PET-CT scan. Blood tests came back normal, but the PET-CT scan results showed lymph nodes affected on 12 different parts of my body (neck, underarm, breasts, stomach and groin area). The biggest one is a mass of 16 cm on my stomach. It also showed minimal involvement of bone marrow. Those results placed me in Stage 4, not something we wanted to hear.
To tell you that it was a shock is the understatement of the year, I felt healthy. I didn’t know when was the last time I got a cold and now I had a paper that said I had cancer. Apart from the swollen lymph nodes the only symptoms I had were tiredness and itching, but those are things you justified by getting older or by having dry and sensitive skin. Along the way I also learned lymphoma can produce joint aches.
After that our search for a second opinion started, we wanted the best doctor possible and luckily for us (me) we found Doctor F, the best hematologist in the country.
I was able to see Doctor F. a week later and I really liked him. Doctor F. studied the pathology report and the PET-CT results. He was very honest with me, told me what were the possibilities and what I should expect from this illness. He ordered an abdominal and pelvic MRI because he wanted to see if any organ or any part of my body was being affected by the masses I have. He was worried about my left kidney, but luckily for me there was no contact with any organ, vein, or anything that can create an immediate problem.
Usually when lymphoma is not creating any problems doctors prefer to do something called “watch and wait”, that it’s just that, you watch and wait for the lymphoma to grow and start affecting your life to treat it. This has the best outcome for the patient, especially when the patient is at a stage like mine where it doesn’t have a cure. I thought we were going to do watch and wait and was getting ready for it, but I already had some symptoms and when you have symptoms you have to treat it. So instead of hearing from Doctor F. the “I will see you in three months for a control” that I was expecting to hear, he told me “can you start treatment on Monday?” And that was it. I started treatment on June 6th, that first day I had to stay at the hospital because I had some side effects to the medicine, the second time was a bit better and every time afterwards was better. I had the last round on June 27th. I’m supposed to take some weeks off for my body to get strong again. I have another round on August 22nd and from then on I’ll have another round every two months until February next year. This protocol is supposed to provide me with a longer remission. At least that’s what we are hoping for.
I’ve been lucky. I haven’t had as many side effects as some people do. My biggest issues are fatigue and headaches. It’s not that bad, but there are some days where I don’t have energy to do anything. This kind of fatigue is something I have never experienced before. I have been very tired before, but this is something else. It also happens suddenly. I can be feeling well and 2 minutes later I don’t have energy to get up from the sofa. Additionally, I’m very forgetful and my concentration doesn’t exist at times. I’m back to reading, but I can’t read everyday. There are days that I can read without a problem, others that is impossible to concentrate on a simple paragraph. This confusion and forgetfulness have produced some upsetting moments, like when I forget DH’s best friend’s name and I just couldn’t remember it or when I was driving close to my house and got so confused I got scared and stop driving for days. But it also have produced hilarious moments, like when I got in DH’s car laughing and he asked me what I was laughing about and I told him something very funny, but I couldn’t remember what was it and I also couldn’t stop laughing because I knew it was something very funny. Or when I tried to turn off the light of the corridor (inside the house) with our doorbell and DH came to the door looking to see who had arrived and I’m there, with the main door open, standing on the threshold laughing because of what I just did.
I want to go back to blogging. I miss it, but at the same time I know I won’t be able to blog as much as I was doing it before all this happened. I just need to come to terms that it’s okay to blog every other day, or even every other week. I know I just need to start doing it again and try not to feel bad when I just feel like doing nothing when I could be writing reviews or doing something for the blog.
And now as to why I decided to share the news of my lymphoma with you and that is to tell you to listen to your bodies, when you feel that something is wrong, most probably it is. Check your body constantly; like that you will be able to catch anything early. Also, go to your doctor for yearly check ups and if you find something that you think is not right, talk to your doctor about it and if the doctor doesn’t pay attention to you, look for another doctor. I know with age our bodies change and we tend to justify changes in our bodies as I did with my symptoms. I just want you to be more conscious of your body and when you see/feel anything different don’t wait to have it check.