CANCER- i wish you were a person so i could kick your A**!!!!

Well, not good news! So she has Poorly Differentiated Sarcoma which looks like Ewing Sarcoma but its not ewing sarcoma. They believe that the cancer started in her uterus and then spread to all of the areas i mentioned before. The Doc said that her uterus has been entirely replaced by the tumor. It also looks like the cancer has spread to her liver and possibly to her bone marrow. These are two new areas that the cancer has spread to. It is a fast moving cancer so he feels that we need to get going on treatment before it spread to other areas even though it has spread since she was admitted. 

We still do not have the PET scan report back but we will meet with the doc tomorrow afternoon to hear those results. Her treatment is going to follow how Boston treats this and that is with chemo first and then radiation or surgery later. They are going to treat this sarcoma like ewing sarcoma even though it is not. Therefore, they are going to use the same kind of chemo cocktail. She is going to start chemo today for one day. And then in 3 weeks she will have more chemo that will last for 5 days. It is a 3 week cycle. They are going to give her the full dose in order to knock the cancer on its butt and then kill it. They are also going to give her medications in order to counter act the chemo affects on her body. The medications will help with the nausea. Some also side effects from the chemo are fatigue, skin rash, diarrhea, numbness in fingers and toes, hair loss, etc. After several months of chemo they will take a break from chemo and do radiation or surgery. After she picks one of those options they will go back to chemo, which will last for about a year. Damn, this is going to be a long road. But, after speaking to the Doc, she said that she was ready. 

Her platelet count is low- so they may have to give her some blood but they will do that whenever they need to. Also, her calcium is high which is making her loopy and having a hard time comprehending and having a problem keeping control of her arms.  

One thing that is great is her BRAIN looks excellent! yahh! Keep Mom in your thoughts! We need all the positive thinking we can get!!

Until i know more...LOVE Jess

U

Well, today was not such a good day. Her pain is still pretty bad so they are still giving her "high test" pain killer. She went today and had her PET scan. Did not have such great service there, but dad will take care of that!  Will not know the results for a few days. Her calcium levels were a little high so she is out of it a little bit. She is having a hard time telling you things but that is because she is drugged and her calcium is up. She is also starting to loose her hair from the radiation treatments that she had completed. 

The Doc said earlier today that there was a possibility that she would have started chemo after she got back from the PET scan but that did not happen. There is nothing in her chart for tonight, so they may start chemo tomorrow sometime. I guess it is just a waiting game. She also has thrush again in her mouth, therefore she is having a very difficult time swallowing. They are crushing her oxycodon pills and putting them in serbert. 

So today was not so great, but i am hoping for a better day tomorrow!!! 

until i know more... LOVE, Jess

Today was not such a great day for mom because she was in a great deal of pain which she can not pin point. In order to relieve some of this pain they have started to give her "Dilotin" (sorry i don't know the spelling) which is the "high test" pain killer. Tomorrow the doctor is coming in to tell us the plan of action (treatment and etc). Mom is also going to go for a little adventure to scarborough by ambulance to have a PET scan. She has to go to scarborough because they do not have the machine at Maine Medical. It is a traveling machine. I will update tomorrow night when we learn what the plan of action is going to be. Until later... Love Jess

LAST DAY OF RADIATION

YAHH! Today was Mom's last day of radiation treatment to the brain and she said it went well!! Yesterday was not such a good day because her pain was extremely bad so they gave her a different type of medication a "high test" pain reliever.  

We found out some new information about what she might had for a kind of cancer. We saw her oncologist again today and he said that she MAY/POSSIBLY have Ewing Sarcoma but that is not a definite prognosis because they are still doing microbiology tests to the sample they took a while back. Hopefully, we will know more by tomorrow when we meet with the oncologist again. 

Today, is a good day. She went outside and sat in the court yard and got some fresh air. Some of her counts today were a little off. Her calcium was up again to 14 so they gave her meds to lower the calcium and put her back on potassium. Her platelet number also lowered so they drew some blood to figure out why. 

That is all i know for now. Thank you to all who are sending their love and good wishes! Thank you! Until i know more...

LOVE, Jess

Mom had an ok day yesterday but very busy. In the morning she went down and had her surgery to put the meta-port in. It is located around her right clavical. The surgery went well but she was pretty uncomfortable after because the pain got to great. She later went down to radiation and had her second to last treatment. Her final treatment is on Monday! yahh. She became more comfortable later that night. 

Mom was working on chemo hats before she became diagnosed so i brought those in (21 hats and she has more at home that need to be tied off) and she is donating them to the floor. Always go giving! 

This morning went well and it has been a pretty relaxing day. we watched a couple movies and then got clearance to go outside so we went outside and sat in the patio for a while. That was good because she was able to get out and get some fresh air. 

No new update really. We will learn more after her final radiation treatment. We will see after we see her oncologist on Monday or Tuesday. Until then... Love, Jess

Update for 4/22- finally some answers

Ok we finally have some new information! The pathology report came back and it appears that Mom has Sarcoma but we still do not know the kind. Boston is still studying the make up of her cells and once we know the make up or kind of sarcoma they will determine the kind of chemotherapy treatment that they want to use. 

Tomorrow they are going to put a Mediport in on 4/23 which is more for long term rather than the pick line which is for short term. Chemotherapy treatments will begin as soon as radiation therapy stops on Monday. Monday 4/26 is her last radiation therapy session, number ten! yahoo! 

PT and OT are still working with her to try and keep her strength up by walking with a walker and by doing some upper and lower body exercises. They are also working on her balance. 

So we finally have some answers which is some what of a relief. 

Until we learn more... Love Jess

Status Quo

No new information, she is status quo. She is continuing with her radiation treatments and will have her last treatment, number 10, on Monday. She is doing well getting up and walking around. To everyone- thank you for the constant love, prayers, hugs, and thoughts that are being sent our way. We love you all very much and thank you for all of the support. Bear Hugs, Love Jess  

Round 6

Status quo! 

Mom had another great night and has more energy because of that. She got up and showered and put real clothes on, shorts and a shirt. Yah!! She took a couple strolls around the pavilion with her walker and did really well. We have been on a holding pattern this weekend until after Patriots day on Monday. On Tuesday she will start radiation therapy again. So everything is status quo. I will let you know if anything changes. Hope she has another great night. Love to all! 

Love Jess

Round 5

Another good night was had by all.

Mom had a great night last night and a wonderful day today. She got up and showered and then walked around a little bit with the help of her walker. She then was taken off of her IV fluids because she was drinking enough on her own and her stats looked good. She also had her catheter taken out and is doing great on her own. All in all a great day. 

Until tomorrow... Love Jess

Round 4

Good Evening!

 Mom had a another great night last night which was good because she was so busy today. Her day started bright and early with the Pick Team coming in and putting a pick line into her right arm. What was awesome was that we (Dad, myself, and Aunt Midge) were able to watch the procedure but we had to put protective stuff on our heads and over our mouths. It was so interesting to watch. After the line was put in they brought her down for a chest x-ray to make sure that the line was in the right area, right above the heart. After the x-ray they decided to take her into radiation. At least she was able to get things done early in the morning. She then had physical therapy come in and worked with her on how to get out of bed and into a chair. So know we have a fancy new recliner in her room along with a walker. 

Also, throughout the day she had multiple multiple visitors which she was happy to see. Some visitors we had not seen for quite some time which made for some special visits. 

We also saw Dr. Aronson this afternoon and did not really give us any new information at this time except that her spine looks great from looking at the MRI taken yesterday. That piece of info is wonderful amazing news. So things are pretty much status quo on everything else.  She is now sleeping and we all hope for another great night of rest. 

Until tomorrow... love jess

Round 3- Can't we just get a diagnosis PLEASE!

Good Evening All...

Last night Mom slept awesome!! She got some pain med last night around 11 and then got a boost of pain med around midnight. She then slept through the night and woke up at 2:30 to get some more pain med. She then slept until 7 am, but only woke up because the nurse came in for vitals. 

Dr. Aronson, who is her oncologist, came to discuss mom's case this morning and we found out some not so good news. Yesterday, they told us that mom had Spindle Cell Sarcoma- but that is not the case. She does not have spindle cell sarcoma. Dr. Aronson said that the pathology report came back as- poorly differentiated malignant neoplasms- which in normal people terms means: We don't know what the hell she has for cancer because the biopsy sample was not good enough. 

What he could tell us was that she has solid tumors in: her brain (5 total with smaller ones affecting her eyes, speech, and emotions), lungs (with one tumor growing into her bone), lymph nodes (including her chest, abdomen, and pelvis), Uterus, Spleen, Thyroid Gland, and it is attacking her muscles and connective tissue. 

Dr. Aronson said that at this point he does not have enough info so he has scheduled mom to go through more test. She had an MRI, is going to have more blood work done, and another biopsy. They are going to put in a Pick Line so they do not have to keep poking her with needles for blood work. The pick line will also be used for her IV fluids. Once all of the new tests are done we should get the results back in a week. Hopefully, then we will have a damn label to put on this cancer. I would feel better if there was a label to what mom has so i could al least research it and have a better understanding. They are also going to schedule some physical therapy to get her up and walking around. They also feel that physical therapy will help with the weakness she feels in her legs. 

They are continuing with full head radiation and she had another treatment today. She said it went well. She also likes the tech guys down at radiation because they crank Billy Joel while they prep her and tell her to get down and boogie. haha. You have to find humor in the little things. For instance i dyed a strip of my hair in the back purple for cancer awareness and mom just had a hoot looking at it. She said it was cool. I was happy to see her smile. 

I think that is all for know until tomorrow. I hope she has another good night and i hope tomorrow gives us better news. Thank you to all of our family, friends, and wonderful staff here on the Gibson Pavilion. We appreciate all of your love and support during this time. Positive thinking gets us far and so does Mom's will to fight. Love you, Jess

The Fight is On- Round 2

Good morning everyone-

Yesterday, mom had her second treatment of full head radiation and it went well. When she came back to the room she said, "Two down!" The treatments make her pretty tired where as the medication, Decatron (which is used to reduce swelling of the brain), makes her feel hot and makes her face flush. She gets frustrated at times because she wants to get up and go but can't without getting a nurse. Yesterday and today she got up and sat in a chair for about twenty minutes. Which is excellent! She will have another radiation treatment today. 

  Aunt Midge and I had a sleepover last night with Mom- and we are now designated as the party room! She did not have a good night last night because she could not get comfortable. She had pain so they gave her some pain medication and also sleeping medication because she just could not sleep. She maybe got a couple of hours of rest. Hopefully, she will be able to rest some today. They are going to look at some different sleep medications so she can get some rest tonight because the past two nights she has not been able to get alot of rest. 

We just learned the identity of the pathology of the cells. She has been diagnosed with SPINDLE CELL SARCOMA. We have not talked to the oncologist yet-but they should be stopping by soon to tell us what the treatment options are. Spindle Cell Sarcoma is a connective tissue cancer in which cells are spindle shaped. They think that the cancer started in the uterus and then spread everywhere else. It is a RARE form of cancer. What i also found during research was: if the tumor begins inside the abdomen, near the back, it may become quite large before it causes any symptoms, which may first be noticed as a mild ache or discomfort in the back. HELLO- Bingo!! I will let you know when i know more!

Thank you to everyone who is sending their thoughts, prayers, and love our way. We greatly appreciate all that everyone has been doing for us (family, friends, and staff here at Maine Medical Center). 

Mom had been complaining of back pain for about a month and was using wet heat and taking advil. The pain got to great so she went to see her physician, Dr. Murray. She was put on some antibiotics and pain killers. The pain continued and got worse so we took her to Maine Medical Center's ER twice before learning on the third visit what really was going on. In her CT scan they identified that her uterus looked enlarged. With further testing we have learned that mom has Uterine Cancer. The cancer has metastasized to her ovaries, lymph nodes, bone, lungs, and brain. We still do not know the pathology of the cell that they biopsied from her back. 

     The doctors are focusing on her brain cancer first and then the rest of her body after that. She is going to have Full Head Radiation that consists of 2 weeks of treatments. The treatments will run from Monday to Friday, one treatment a day, last about ten minutes, with a total of ten total treatments. After the two weeks the radiation in the brain will stay for three to six months after. They are treating the brain with radiation to prevent further attack of the brain so that the cancer in her body will not travel back up to her brain. She had her first radiation treatment yesterday at 3:30pm. She will have another treatment today.

She is doing well and so is the family. We are just trying to educate ourselves about what is going on. We are staying strong, trying to stay positive, and are ready to fight like hell. Mom is a fighter and will get through this. Tomorrow will be a better day!! I will keep you all updated daily about her progress. 

Mom's address is: Rosemary Simmons, 

Maine Medical Center

Room 569 Gibson Pavilion 

22 Bramhall Street, Portland, Me. 04102