I've been writing this post for several months now as things keep getting updated, new tests are performed, and Sarah wasn't quite ready for me to post it. But now she gave the all-clear, so I will bring things up to date.
Thank God the cancer is localized (only in the right eye conjunctiva), but it took a while to confirm this. The official diagnosis - "Stage 1E or T1b lymphoma of conjunctiva palpebral with fornix".
They have also found a pupillary defect from all of this testing as well. And that is another more involved rare situation that I will go into later on in this post.
During all this time, Sarah had a visual field exam to her eye which showed vision loss but other exams couldn't explain why, which perplexed the specialists she was seeing. The structure of the eye looked healthy. So they recommended a brain MRI to see if there was optic nerve damage or other evidence of tumors in the eye orbit or brain. Now this gave us all a moment of great pause and worry. The report on the MRI finally came back 10 days later as normal, at the same time the visual field test was redone and showed much better results, so we thought the first test was skewed. But a week later, they performed yet a third vision field test. This one was a bit better than the worst of the previous two, but nowhere as good as the second and best one. Really? This is the test where they have you look into a screen and tell them when you see the light dots appear. So it's not the most scientific test, depending on how sharp you may be one day from the other, etc.
The several weeks up to this point were quite nerve wracking and worrisome. It was odd to be feeling a bit good about the outcome at this point, since having no cancer would be much better. But considering the fact that all the other tests were normal, we were given a moment for a sigh of relief.
After those additional range of vision tests to both eyes, followed by a second MRI, with focus on the orbit (eye), and Sarah was almost ready for the stint of radiation to the right eye that we were told would cure the lymphoma. All this several weeks after the radiation simulation was performed back with the hopes she could start her treatment in March.
The simulation is the process whereby they set her up for the radiation -- they create a mask that fits snugly around her head and face, keeping it perfectly still and in place for the radiation. There will also be a tungsten contact-type piece that will be used to protect her optic nerve during the radiation. And the radiation oncologist will create a gummy-bear like material to be placed on the eye surface to trick the radiation to think her eyeball surface is higher than it really is. This is done so that the radiation hits the surface eyelid tissue, rather than deeper into the orbit's surface. Sarah is being so patient with all she has had to endure. The waiting seems to always be the hardest.
Initially Sarah was told the radiation treatment would be four weeks (20 days) of radiation to her eye, but was later reduced to three weeks, 5-days a week radiation. Then the plan will be check ups quarterly for a period of time, followed with annual exams forever, all to double check that this does not return, or appear somewhere else in her body.
Kaiser contracts with Queen of the Valley Hospital in Napa as one of the locations for this radiation treatment, so that is where Sarah went for her radiation, which she finished up on May 24th.
The mention of Saga in the title is probably a bit more clear now. Here Sarah is 6-weeks post radiation and she just completed the next step I mentioned earlier and will details next.
During these last few months, it became apparent that the visual field loss was due to several anti-bodies that Sarah's body was creating in response to the lymphoma, and a special blood test confirmed this. The problem, though, is that the antibodies were working in over-drive and actually damaging her retina, its called autoimmune retinopathy (AIR). One of the recommended treatments for this, although this is very rare and there are no medical papers on it, is an infusion called IVIG (Intravenous Immunoglobulin). She is very young for this rare condition, as it usually presents in 50-60 year olds.
Immunoglobulin is part of your blood’s plasma. It has antibodies in it to fight germs or disease. When people donate blood, this part can be separated out. Then it can be administered through a vein in the arm, or IV. Sarah just completed 5 long days of these infusions at Kaiser Vallejo last week with her last infusion on Friday, July 14th. I was happy to be able to support her this time, as she took me to the majority of my infusions a year go. And her hubby was there with her on Friday. She tolerated the infusions pretty well, until the third day when she came down with a bad headache and some nausea, probably as a result from the headache. So the infusion nurses slowed down the IV drip for her final two days, and she felt well enough to get through the week, but still not too chipper. She and her little guy came out to the Dallara Family Reunion with Mark and I on Saturday (see photos below), and you could see she didn't have much energy, which was totally expected. On the way home she did not feel well at all so they spent the night with us. Finally by midnight the headache subsided and I think after the overwhelmingly hot weekend we just had (104 degrees), she is starting to feel a bit better. But her little guy had a blast at the reunion enjoying the wading pool and getting to know a bunch of new cousins about his age, as did Alura's little ones too.
It will be a matter of how Sarah feels the IVIG worked and whether it stabilizes her vision and prevents further loss -- that is the plan, and hope upon hopes, it works. She can repeat one day of the IVIG per month if she feels she is getting benefit from it.
It is my wish, hope and prayer that she continues to feel better, and sometime soon gets over the fatigue from the radiation, and any side effects from the IVIG. AND that any future treatments, go well and MOST IMPRORTANTLY, that all are very successful in stopping any further vision loss and lymphoma. It is my mother's wish for my sweet daughter.
Meanwhile, thank you to her sweet husband and mother-in-law for their love and support during this process, and for all her supporting family and friends. It certainly takes a village of love, support, and compassion -- If I have learned nothing else from my ongoing journey, it is this.
|Trying to keep smiling.|
|Getting some knitting in before the headaches and fatigue set in.|
this past Saturday.
Just had to finish with happy stuff.
|Little cousins getting to know each other and having a blast|
|The original Dallara Banner artists.|
|More cousin fun|
|Getting to meet and know a new cousin|
|Dad's sweet cousin, Al. One of the last of his era.|
|My sweet daughter and grandson.|
• I AM STRONG • I AM HEALTHY • I AM LOVED •
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