Last Monday, Leap Year Day, I saw my radiation oncologist to get my MRI results. Ian had the day off so he came with me. It was the first time he had met my rad onc. We seemed to spend a long time twiddling our thumbs but it turned out my onc had a resident with her and any time there is teaching going on things just take longer. Fine with me, we need the newbies so they are ready to replace the oldies.
When my rad onc came in the exam room the first thing she said that the MRI was showing the skull lesion as being mostly stable with minor shrinkage away from the lining of the brain. Even with the stability because of the rather dramatic changes for the worse in my symptoms, as soon as she had my MRI she consulted with the stereo static radiation group.
At that point I practically jumped out of my chair and started waving my arms…… “wait, wait, things have changed again. My symptoms are now dramatically better than they have been in months. I cut my steroid down to 1 day off, 2 days on for the last 2 weeks with no problems. And my tongue! My tongue! It is smoothing out and I am not getting the weird aliens trying to punch their way out of my tongue! See???” And I stuck my tongue out at her….”See???”
My onc looked at my tongue and she was totally amazed at the changes.
And I explained how I felt like I had a whole head and my ear has popped a few times. I have probably not felt this good since September. Needless to say my onc was totally thrilled with what was going on.
With all the symptom news out of the way we moved on to what the stereo static group said. This group does a much more specific targeting of radiation sites than is routinely done with radiation. Stereo static radiation is typically done at sites that are at higher risk of damage from radiation or at sites that have been previously irradiated and are now close to the maximum threshold of allowable radiation. In my case both situations apply.
The lesion is 8 mm away from my spinal cord which is a rather delicate piece of my anatomy. Plus, with previous radiation I was hit from both the left and right side so I have reached my maximum allowable dosage of radiation for my spinal cord in that area.
With all of that the stereo specific group was confident that they could target the lesion by only going at it from the right side and were ready to move to a planning session. At the actual radiation sessions I would again be strapped to the table with the face mask and then immediately prior to each session I would have a CT scan done to ensure I was in EXACTLY the right position. No pressure on anyone 😛
Because of the improvements in my symptoms and the general policy of treating the patient before treating the scans, my rad onc and I agreed that right at this moment radiation is not needed. We will continue to let the chemo do its thing and we will watch my symptoms.
As for why my symptoms may have changed there isn’t really a way of knowing. It is possible that my adrenal glands have adjusted to the low level of dexamethasone in my body and are functioning more normally and are producing cortisol again. Or I may have still been dealing with the side effects and inflammation from the radiation last August. The inflammation may have gone down which has helped to decrease all of my symptoms. We really don’t know why the changes are happening but I was told to keep doing whatever I was doing. I’ll get right on that 😉
We chatted a little more and my rad onc told me that her office was right next door to my medical oncologist’s office so they saw each other a lot and discussed their cases regularly. She went on to say that I was a very memorable patient so whenever my medical onc mentioned me my radiation onc always knew exactly who they were talking about. And apparently I’m memorable for good things and not bad things so that is always nice to hear.
I was also told that my medical onc was booking me for an abdominal and head CT to go with the MRI. If I was potentially going to undergo further radiation the abdominal CT especially is helpful to make sure there are no sites of progression that should also receive radiation.
I ended up being booked for my CT on Friday morning before I had to go to the Cancer Agency for my pre-chemo weigh in and medical oncology appointment. And I had to fit in getting my blood work done as well. A bit of a busy day.
The CT was uneventful and I was told the results should be ready Monday or Tuesday. I had my blood collected and a couple hours later it was off to the Cancer Agency.
I saw the same substitute oncologist as the 2 previous times and like the last visit this one was very smooth. My white cell count was over 5 and my neutrophils were 3.7. Yay for the Neupogen. The one thing of interest was that my hemoglobin was down to 107 g/L…….ohhhhhhhhh. I had noticed that I was feeling more fatigue and out of breath than I had ever been before and going up stairs or up slight hills were not fun. Turns out that at my hemoglobin level getting out of breath while going up a flight of stairs is pretty normal. Hopefully my hemoglobin won’t get much lower and will also bounce back quickly once chemo is done.
The following Monday was Docetaxol #7. So close to the end!!!! It was almost uneventful. For some reason on the weekend my right arm puffed up…..I was wondering if my cheeks had gotten so full of water from my steroids that the water had moved into my arm. I wore my compression sleeve the night before treatment and it made the swelling to down enough in my hand my nurse could still get the IV in. I really prefer to not have IVs in my left hand since I am left handed. Other than that slight hitch everything was smooth. Yay!
On Tuesday I got an email from my medical oncologist that the CT scans showed no progressions and everything remained stable. Happy dance!
On Wednesday I started my Neupogen injections again. It is getting easier to inject myself. And I’m even getting competent at filling the syringe.
The following Sunday Keetah and Satori the pooch arrived for a visit. We managed to be super productive and get a food digester installed…… Full disclosure Keetah did most of the work so if anyone needs a digester installed I know a pro 😉 We also painted and put together an Adirondack chair. Only 2 more to go and I’ll be ready for summer.
On Friday my guests left and on Saturday Laura arrived for the weekend. I got caught up on all the St. Paul’s lab news. I miss you all, Labbies! We also hit the Royal BC Museum. If you are ever visiting Victoria it is definitely worth a visit.
Laura left Sunday afternoon after a great visit. I hope to be back in Vancouver in June.
Hmmmmmm……..after all that busyness I don’t remember what happened the next week. I think it must have been quiet until Thursday. Thursday was pre treatment weigh-in and oncology appointment. I saw another sub but it was the onc I saw during my hospital admission in December and I really liked him. I almost forgot to tell him about my swollen arm but I managed to turn on my brain eventually.
He was concerned that the swelling may be due to a blood clot so he was going to order an ultrasound of my arm with the hopes I would get in within a week. I guess he wasn’t hugely concerned about a potential clot going anywhere vital.
About an hour after I got home my phone rang……could I come in for my ultrasound that afternoon? Umm, sure.
A couple hours later I trundled off to Vic General. Once there I didn’t have to wait too long to get into the scan room. The tech did a bunch of pictures then told me she was going to show them to the radiologist. I didn’t have to wait long again before they both appeared. The tech rescanned various areas so the radiologist could see the blood flow in action.
After about 10 minutes the radiologist said that the swelling appeared to be due to a blood clot in my right armpit. The clot did appear to be old….at least 3 weeks since that is when the swelling started. It was also in a peripheral vein as opposed to a deep vein. Because of those factors she said I didn’t have to go to Emergency right then. She would try to contact the onc that had ordered the test, but it was 4 pm on a Thursday right before a long weekend. My official orders were I could go home but if I didn’t hear from a doctor by tomorrow I had to contact someone to get new directions. Alrighty.
After wiping off all the fabulous ultrasound gel it was off to Mom and Dad’s for a family dinner. My awesome Cousin Eh was in town for Easter weekend so there was a gathering that involved yummy food, good alcohol, and entertaining conversation as always.
On Friday I didn’t hear from any doctorly types so I emailed my oncologist to see if I should just call the on call person. Of course that was my instruction so I put in a request to have the on call onc be paged. It felt like the good old days in the lab…..a super stat and paging the on call doc…..at least it wasn’t because I had just found a new leukemia 😛
I didn’t have to wait long before I was called back. The oncologist explained that because the clot was old and in a peripheral vein that does cause indecision about whether I should go on blood thinners. His feeling was that because I was getting symptoms in the name of a swollen arm in this case blood thinners would be the better way to go. But, he was okay with doing only a month rather than 3 months that is typically prescribed for clots in deep veins.
He then said the drug is expensive and I told him that wasn’t a problem as I had Fair Pharmacare plus coverage through both my and Ian’s work. I have actually maxed out both the Fair Pharmacare and my work deductibles because of the Neupogen and I get full coverage for my drugs now. Very fortunate.
The on call onc was happy to hear I had coverage and said that he would fax a prescription to the pharmacy right away. The trick would be getting a pharmacy that had the drug on hand. He thought that it might be tricky to get even 4 to cover the whole weekend without having to hit more than one pharmacy. Lucky for me I picked the right place and they had 7 on hand. The prescription was for 14 with a refill of 14. That way if the clot gets broken up quickly and the swelling goes away I don’t have to be stuck with a whole bunch of drug left over.
Ian and I waited about an hour before going and picking up the drug. And lucky me yet again, it is a drug I inject into my abdomen. I really hope the clot goes away quick. I have enough holes in my stomach from cat claws when Orchid sits on me and kneads if I don’t pat her enough I really don’t need so many bonus punctures.
Saturday was Easter barbecue dinner. Ian made brisket. Yummy! The same gang from Thursday plus Sarah and Doug. Good food, good alcohol, good conversation.
Now it is Sunday night and I’m hopped on the high dose of steroid in preparation for my LAST dose of Docetaxol. So excited!!!!
Oh dear. I just realised I have dragged out this post for about 3 weeks. I hope it isn’t too convoluted.
I will post again eventually…..hopefully with news that I am completely off the steroid. I survived 1 day on 1 day off so the next big test is 2 days in a row without steroid.
Happy Easter everyone! I hope you all enjoyed good food, good alcohol, and good conversation 🙂