~ the PET scan experience…

Today I had a PET scan and have transformed into Radioactive Woman! Not really but it’s fun to think of myself as a superhero for a day. Not knowing what to expect I was pleasantly surprised by this zen-like experience.

Arrive on time, no waiting around and promptly taken to my lead walled room. It started with a little chat to verify if I had followed the instructions I was given. Which were to fast and only drink water from 0500 on the day of the procedure, keep warm and no physical exertion for two days prior. Check! Quick line of questioning to ensure there have been no changes to the information I had provided on Friday. Check! Then a blood sugar test with the finger poke and insert the intravenous line and back to my little room.

Now things become strict, no phone or materials while being injected and activating as I call it. Ok. Warm blankets and a big cozy recliner and I’m ready to be transformed. The technician wheeled in a machine and began with a saline solution and then the radioactive material. This took only a few minutes to inject. As the injection of radioactive material began she gracefully stepped back to be against the wall across the hallway. When it was done she removed the machine and closed the door. Ah, 45 minutes of peace to activate. Nap time!

I heard a quiet knock on the door, the door opened and a lady said we are ready for you, then she stepped back away from me too. Into the CT scanner room we go. I was instructed to lie on the table and not move…for 20 minutes…another light nap and the imaging was complete. Results will take 2-5 days.

If only all medical tests were this relaxing. The only superpower I seem to have gained from this experience is the ability to have people back away from me and maintain their distance. 😉

I sparkle on…one day at a time. 🙂

~ treatment plan ~ step one…

Tuesdays seem to be my day for appointments. Today I saw a hematologist at the cancer agency. We reviewed my story to be sure she was clear on all that has happened since January. Then went on to discuss non-hodgkins lymphoma and the fact that more analysis is required to identify the specific type as my diagnosis. This meant more blood work and a bone marrow biopsy which I will describe later. It was nice to learn that I have the most common type at the higher level which is treatable. Also good to know that each case is unique and not to listen too much to others experiences. (no internet searches please)

We discussed the chemotherapy recipe, the duration of treatment and the possibility of radiation after the 6 cycles. The doctor is hoping treatment will begin in about 2 weeks. I will receive treatment every 3 weeks for 6 cycles. So about 18 weeks which will take this into November. Also the side effects of the drugs in the recipe. The common side effects being, tired, nauseous (rare vomiting), hair loss, risk of infection and the importance of monitoring my temperature. Having a fever above 38.3C means a trip to the ER, stat! As we progress I am curious to see what my natural hair color is, I have not seen it in many years. I see fun with wigs in my future..maybe I will look good as a brunette. 😉

It was encouraging to hear how quickly the body can respond to treatment. It may be just a matter of days for the mass to begin shrinking and reduce the pressure in my chest. Hopefully then my lung will return to normal functioning. 

When being registered this morning I learned that I was already a patient in their system. This was news to me, I asked if they had the correct name. Yes it was me. Apparently when I had what was labelled pre-cancerous cervical cells in 2005 my file had been forwarded to the agency. Thankfully things were resolved in 2005 and I have not thought about it since.  So today I received an old number that is new to me. 

My oncologist is a nice lady, very pleasant to deal with. When she described the bone marrow biopsy I laughed and said now I know why you don’t tell people about this in advance. Note – never look up a procedure out of curiosity in advance, just go with it and be brave, something to bite also helps. I consented and she proceeded to identify the best place to take the sample of bone marrow and bone, the back of the hip where the bone is nearest to the skin. The needles of freezing solution are unpleasant and I was as ready as I could be with my friend holding my hand and a tightly wound up pillowcase in the other hand. A few minutes in, breathing deeply and squeezing the pillow case hard I asked, are you finished?.. she responded, no, we are halfway. UGH! I could feel what she was doing so she gave me another needle of freezing. OUCH!! This time she hit a nerve that went down my leg and I yelped. Then she proceeded with obtaining the bone sample. By now I am breathing deeply, eyes closed and biting the pillow case! She worked hard to obtain the sample and was really pressing against my body. I was relieved when she was done. I rolled on to my back to put pressure on the area and said to the doctor, you win!, that was worse than the needle biopsy in the chest. I give my friend credit for being able to be present during this process. She said it looked like a corkscrew motion to obtain the bone sample. Yuck! This is why I always tell the doctor and nurse to talk to me about anything other than what they are doing. 

Now I am back to waiting for the appointment for the next test, a PET scan and the date for my first chemotherapy treatment. The first treatment session will be 7 hours long. Yes, 7 hours! One of the drugs in the recipe can cause an allergic response  and therefore must be administered slowly while the patient is closely monitored. I learn something new everyday. 

As I learn more about this illness I become more comfortable with my day by day approach. This illness is only one aspect of my life. I still have a home to care for, bills to pay and a very needy cat to answer to. As well as dreams I aspire to. I love to travel and meet people. I have a list of places I have been invited to visit by friends I have met in my adventures. This list is my inspiration

I sparkle on, one day at a time.  🙂

 

~ the issue identified…

Since the biopsy I have been feeling pretty good. The strange pinching feeling deep inside my chest has stopped yet I notice that I am gasping for air more and there is a different feeling across my chest. I called both doctors offices to let them know and see if this is a normal post procedure. 

On Monday I received a call to see the respiratory specialist on Tuesday afternoon and have another xray, she has news. Great but I wasn’t sure I would sleep that night. I made arrangements for a friend to accompany me to the appointment and carried on with my day. 

Tuesday morning I walked in circles around my house, I have come to realize this is what I do when something is on my mind. I received another call to see the doctor responsible for my biopsy on Wednesday morning.

Are you keeping up with all these doctors and appointments? 

At the Tuesday appointment the doctor explained why she requested another chest xray and used the images to explain. She noticed on the images from my CT biopsy that something had changed in the left lung. The upper area of my left lung is collapsed. This explains the changes I am feeling in my chest and breathing. Then on to identification of the issue, pathology had just called her to share the results, non-hodgkins lymphoma, b-cell and aggressive. She explained a little about the cell types and that aggressive cells are a good thing, since they will respond well to treatment. I laughed a little to myself thinking of course my cells would be of the high energy variety, just like me. She went on to explain that further pathology is underway and is needed to identify more specifics in order to create the correct treatment plan. A requisition has been sent to add an oncologist to my team. Once again we wait.

I was honest and said I have heard the term non-hodgkin lymphoma before but don’t really know what it is. I respect her response in that the oncologist will be able to better inform me on the details. This is fair and goes along with my one day at a time approach. I will be sure to ask many questions once I meet with an oncologist.

Another day of reality, this is my life. My friend and I had lunch and talked about the information we had just heard. I am at a very nice point in my life to deal with this, I feel at peace with my life. This is an oxymoron yet true, I have no job to worry about at this time. No pressure to explain myself to anyone. I have learned to live simply and this has been one of life’s greatest gifts. 

My friend accompanied me to the Wednesday appointment with the thoracic surgeon. The standard questions and a little curiosity about my life and currently not working, he asked what is your claim to fame? Ha! I enjoy being an enigma. We shared the information from the appointment the previous day and he is comfortable with the path things are on. It would be of no value to do anything to deal with my collapsed lung now as it is likely a result of the mass growing. 

Now that the issue has been identified things keep moving forward. I think the word cancer scares people. I have a unique way of looking at life in general and this is no different. Sure there are going to be rough days, I look at it this way, those days give me colourful stories to write about. 🙂

People ask me questions like do they know what caused it, there has been no talk regarding identifying a cause. The focus is on identifying the information needed to move forward with treatment. When chemotherapy is discussed, quickly people comment about losing my hair. Slow down, we are not at that point and we can deal with that if and when the time arises.

When I think of the size of the mass I see a large orange and laugh, I have an orange in my body…well I am not a human fruit bowl so the orange is welcome to leave at any time! ha! 

I am still me, silly, giggling and full of spirit. 

I sparkle on…one day at a time.     🙂

p.s. Please remember, No internet searches. 

 

~ the quest takes a new path…

Wow! It is exactly three months since my last post and I am still unwell. Since then I continued to cough endlessly and therefore have had a variety of tests. Most valuable seemed to be the CT scan which identified a 7x8cm mass in my left lung. This explains the chest pain, shortness of breath and fatigue. In summary I have now had 5 chest x-rays, multiple blood tests, 2 ECG’s, been tested for TB (the result was negative), 2 CT scans and the latest a fine needle lung biopsy while in a CT scanning machine. 

There is one thing I have consistently commented about since I began to feel unwell in January and that was the spot of pain in my chest. This pain was stronger in the beginning and over the Easter weekend it had released its grip, a little. When the mass was identified it explained why I have this spot of pain as it is pressing on the chest wall. 

Flying home was a little nerve-racking, especially since there is no direct way to get to Saskatoon. I have to say the staff at Air Canada were kind and attentive to make sure I was okay while flying. I returned home with all my Italian medical documents and scans on disk ready to see my doctor. More x-rays and blood tests, it feels strange not taking a friend along to interpret/translate. 

Last week I had an appointment with a respiratory specialist. She reviewed the CT scan with contrast and the various x-rays and consulted with another specialist. Then we sat down to chat. The usual questions, family history, work history, and previous health issues, then onto describing the current health issue. I found it interesting that she asked me three times in this line of questioning if my family lived nearby. Nearly 2 hours had passed when we arrived at the time to discuss what she believes is the issue. I knew I was present in the room as words such as biopsy, lymphoma, lung cancer and treatment plan hung in the air and didn’t seem to penetrate my mind. This was so surreal. I felt like a character in a book or movie being in this room hearing this news, thinking is this really happening? it’s just a cough. The doctor could tell that I was a little too calm  for just having had this particular conversation. She asked if there was someone I could spend the rest of the day with, I looked at her quizzically. She continued to say that this was a lot of information we discussed and it would be good for me to be with someone. Then reality hit. I became a puddle. After I left the doctor’s office I stopped for the blood tests she requested and then slowly walked to my car in a zombie like state. 

Once I reached the car, I sent a few text messages then drove to the pharmacy. The pharmacist said something about the prescription, I remember looking at him and saying I don’t have a cold, call the doctor if you have questions. I arrived at my house still stunned, did my best to collect myself and called my parents, my mom took the news well as she was expecting something since I had been coughing for so long. A few friends came to my house that day. It was a day of shock and emotion. 

As I continued to share this news with friends and family, the response has been wonderful, kind words and offers of help. When people see me they are surprised and often comment that I look good. I laugh and say what did you expect? They expect me to be frail and thin. Nope, I am my usually smiley and jolly self. It is interesting that people seem to believe that you have to look poorly to be unwell. Not so at all. I move a little slower and speak a little softer since I struggle to get enough air to talk as much as I would really like to, but that’s about all that is different. haha

I have made a promise to myself, and I ask my friends and family to do the same…No internet searches for any information regarding my illness and treatment. Promise!  I have doctors to ask questions of and I will ask as things progress. Currently I don’t really know what lymphoma is and that is ok. When a diagnosis is confirmed I will ask questions. For now my energy is better focused on eating well and resting. 

Friends are great. A group did the spring yard cleaning and planted flowers, shrubs and my vegetable garden last Saturday. It was nice to see everyone. An afternoon of activity like that wears me out, even though I was just walking around and talking. I fell asleep that evening at 6pm and stayed in bed all day Sunday. This is my pattern, one day of activity will mean two days of rest to recover. This is something that is difficult for others to understand.

Being unwell is strange. Every day people ask the question, How are you feeling?… I feel good, with the exception of pressure/pain in my chest and the challenges I have with breathing. This is how I have felt for months. I have learned to respect my physical limits. I am happy and do what I can within my physical limits. If I feel tired, I rest. Thankfully I now have medicine to quell the cough. This is a blessing. My body has been so tired from coughing daily for months. This helps me sleep and being rested helps me to maintain a positive attitude. 

Two days ago I had a biopsy. The doctor chose the least invasive method, a fine needle lung biopsy performed by an interventional radiologist while the patient is in a CT scan machine. This procedure is pretty cool. I was not sedated which I was a little unsure about. The worst part was the needle for the freezing into basically the centre of my chest. Ouch!!!! I asked if I could swear because it was wildly painful. After the freezing set in no problem. The doctor asked how squeamish I was and I said don’t tell me anything you are doing, talk to me about something else. So we talked about my time in Italy. Before I knew it the procedure was done and I had 4 hours to relax, since I was not allowed to move for that period of time. Nurses were checking on me regularly as I read a book and had a few naps. 

Recovery has been a little painful after this biopsy. Every way I move I can feel a pull in my chest. I think this mass did not appreciate being disturbed. It will heal. 

Now the waiting for results, apparently these take 5-10 business days. So two weeks. After being ill for months now, two weeks will pass quickly. Hopefully then we know what we are dealing with and can make a treatment plan. 

My new physical limitations are a little frustrating, it is the little things around the house that I can’t do that irritate me. Such as taking out the garbage and recycling, the bins are too heavy for me to take to the curb. At 4:30 this morning I remembered it is garbage collection day, so as I sit here typing I am listening for my neighbour to take his bin out so I can ask him to take mine out as well. Mowing the lawn, making a bed, even laundry is more physical than I had realized before. I have taken up ironing, the linens in the guest bedroom look fantastic. haha  This is where I cannot get stuck on being proud or stubborn and must ask for help.  

Food is another interesting aspect. One of the first things people offer is to make food. Interesting since food is associated with comfort. While wanting to eat healthy I realize there is no single plan that appeals to me, so I am going to take the parts I believe are beneficial and create a hybrid eating plan for myself. I’ll share my eating plan as things progress as well. 

The challenges of communication. I am very fortunate to have so many people who care about me and send me well wishes.  I want to keep friends and family informed yet I do not want to be sending and responding to messages all day long. While talking in general tires me. Please have patience since I may not respond quickly or forget to respond at all.  

I sparkle on…one day at a time.         🙂