This is a continuation of the previous update post and is a summary of what occurred between mid-July thru to the present.
In my previous update, I forgot to include that in June after my 5th or 6th round of chemo my toenail came off. The one next to my big toe on my right foot. I was afraid I was dying or something… at least, that’s what I went out asking mom after it came off.
Here’s a photo of the cake my niece, Cianna, made me. It made me laugh because of either the misinformation or just the innocence of a child’s mind, but it read “No More Cancer” as if I was cancer free. I thought, “Well, we could always hope.”
Roughly two weeks after my oncologist declared that I may be in remission I had a large mass reappear in the back of my right arm. Aug. 4th I had a Punch Biopsy done. It came back negative for the lymphoma, but my surgeon and I both knew that was incorrect and figured we weren’t able to get deep enough with a Punch Biopsy, so we scheduled a Surgical Biopsy for Aug. 15th. He had to go in deeper than anticipated so the incision is pretty long and deep. Got six stitches... kind of looks like a Frankenstein scar, lol. Two days later he called with the results. Positive for the same lymphoma I've been fighting.
See the white ring or lighter ring around the incision area, that's because of the pressure caused by the mass pushing up underneath my skin. It was so tight I was afraid the stitches were going to rip through.
Saw my oncologist on Aug. 24th, she referred me to a radiologist to get started on radiation treatments. She also discussed doing chemo again… she was going to a conference and was going to present my case. Saw the radiologist for a consult on Sept. 2nd. Also had a PFT (Breath Test) to check my lungs… still having extreme shortness of breath. Starting to fear there was permanent damage to my lungs from the chemo or something. Tests showed I have good lung capacity. The nurse giving me the test was surprised, she could hear my shortness of breath just walking down the hall, she also heard the wheezing. When she listened with the stethoscope she realized the wheezing was coming from my throat/esophagus area.
On Sept. 7th I went to Rex Radiology for my Radiation Simulation which is setting up for my radiation treatments. On Sept. 13th I saw my oncologist again, she was told to hold off on the chemo for if and when I really needed it. There is a new drug out now that targets my type of lymphoma, but it just came out and is very expensive. Hopefully if I do eventually need to do chemo again, this is what they want to use and at that time it will come down in cost… but for now just stick to the localized radiation. She also was setting me up to see an ENT about the lump I feel in my throat and the trouble with my breathing. ENT appt not until Nov. 15th. I started radiation on Sept. 14th and I’m scheduled for 17 treatments. I go every weekday at 1:15 pm at the Rex/UNC Radiation Oncology, Rex Cancer Center of Wakefield.
Into my second week of radiation, I noticed the mass under my armpit seemed to be getting bigger, when I saw the radiation doctor that Wednesday I asked for his opinion to make sure I wasn’t feeling more than what was really there. He said he felt something. So I called and scheduled an appointment with Erin on Sept. 27th.
On Saturday, Sept. 24th I had an appointment for my car… the brakes hadn’t been feeling right and figured I should get it in for new brake pads. Joe picked up my car on the way to work (it’s his garage), worked on it during the day, then brought it back to the house. He lives near us and knows what I’ve been going through, I’m friends with his wife also. That was incredibly nice of him to go out of his way like that… and, he ended up needing to replace the rotors too. Then he and his wife gave me a truly amazing gift, he did not charge me a dime… it was a gift from them as a way to help me through my financial struggles. At first I said, “No, you need to feed your family.” But then he went into this spiel about feeling led to do this, situations he’s been in, vague situations his wife had come up against, and that they really wanted to do this. It was so sweet and he sounded a little uncomfortable and he had me tearing up… so I told him, which I have been told, that I needed to be more gracious in accepting gifts. (I’m uncomfortable accepting gifts or help, almost like I don’t deserve it.) So I would accept their gift graciously. I am truly blessed to have people like this in my life. I am blessed in many ways.
On Sept. 27th I saw Erin, she felt the mass. I had an appointment for a PET scan already scheduled for my 3-month check-up, so we just bumped it up from Oct. 5th to Sept. 29th. Erin called the next day, the mass under my armpit lit up… so did the bone marrow in my pelvic area. The cancer has moved into my bone marrow. Fortunately it has just started, it was peppered and not large spots. So after radiation they want to start chemo with that new drug. It was tentatively set up for Oct. 10th, but they wanted to wait 2 weeks after my radiation ended and they needed to get me approved for the drug financially through SeaGen (Seattle Genetics), which I was last Friday, Oct. 7th. So now I’m tentatively set up to start chemo on Oct. 20th.
On Oct. 1st I took my nephew, CJ, driving to teach him to drive a stick shift. He did really well.
On Oct. 4th, mom had to put her cat Fluffy to sleep. She had a brain tumor. Her leg was spasming, found out her pupils were enlarged and she was howling all the time because she was almost totally blind, she started throwing up the night before and did not eat that morning.
On Oct. 5th I saw the radiation doctor again and we decided to extend the radiation treatments for (at least) 3 more sessions. We’ll reassess the situation on Tuesday.
Now that I’m tentatively scheduled to start chemo on Oct. 20th… AND since I found out that my treatments will be every three weeks… AND I’m scheduled for 16 sessions… which means approximately once a month for a year and four months… I have scheduled an appointment with a Vascular Radiologist about getting a port in my arm like I had back in 2005. There is no way in hell I’m going through 16 months of this with a PICC line as first discussed (before I knew the time table). I’m trying for an arm port first, if not, then inquiring about another chest port, then the PICC line would be a last resort… if ALL else fails.
My appointment with the Vascular Radiologist was supposed to be Monday, Oct 10th, but someone screwed up and wrote it on the wrong day, it was put in on Tuesday… but the doctor doesn’t do this on Tuesdays and Monday was all booked up now… so I had to be moved to Wednesday, Oct. 12th. Which I am also scheduled for my Chemo Education class. We also made an appointment for the surgery on Friday, Oct. 14th. just in case we get a thumbs up for the port. We can always cancel if needed.
My oncologist said I should have a bone marrow transplant, but without insurance no one will even discuss it until we have the money. I was told it would run a couple hundred thousand dollars. The procedure itself is about $35,000., then you have doctor fees, hospital fees, medications, follow-up care, etc. So I need to research foundations and organizations to see if I can find any help there, I will also need to raise donations to help fund it. I am in the process of setting something up so that anyone can donate any amount they like through paypal, with a credit card, or bank account, and possibly checks. Even if all you can donate is $5, if I get enough people to donate $5 or $10 dollars... I might just be able to raise enough. I will have the donation button on my blog and will post it on my Facebook page.
My cousin Kelly is having a double mastectomy today. Praying that it goes well.