Friday, April 20 – I was a little tired….

So I miss-typed the size of the “hole” inside my boob, it’s 6 cm deep from the 3 o’clock position and 3.5 cm from the 12 o’clock position. Oops, big difference between millimeters and centimeters. Now that I have that out of the way, we went to our Support Groups Tuesday night, and I signed up for an 8 week course on Mindfulness being offered at the Cancer Support Community with one of my friends from my Support Group.

Camilla came back on Wednesday morning and changed out the packing. I still leak, but she used gauze and a Telfapad with some special tape and it didn’t leak out through all that onto my bra. I have had issues with some tapes; some first aid tapes leave me very red and itchy. She used an alcohol wipe to soften the adhesive on the tape before she started to pull off the outer dressing. It didn’t help much. She said this tape was gentle and would not be hard on my skin. It was anything but. It stuck so bad even she was having a hard time not pulling my skin off… it left me with some nice irritated areas. Once she got that off, she pulled out a zillion miles of tape from my boob, flushed it with sterile saline solution, and agreed to try the tape I buy for myself – 3M Nextcare tape for sensitive skin. She liked it and took some pictures of it so she could try and add that to her kit. She re-stuffed my boob, and using my tape she applied the outer dressing, and told us that all the supplies she ordered for us should be here any day. She left us with some of her supplies to get us through.

After she left I used some of the waterproof tape we have and a cut up plastic bag to create waterproof barrier so I could shower. I was not very sure of the leak proofness of the temporary cover over my dressing. I showered quickly, moisturized, dried off, got my armor bra back on, and away I went with my day. We had grocery shopping that needed to get done. While we were in line to checkout at Albertson’s one of the cashiers on break came up to me and asked me about my port. She had seen my scar healing near my collarbone. Told her mine was just taken out a few weeks ago, I didn’t need it anymore. This led her to ask me how my doctor knew it was time to have it removed. Told her that was actually my decision as I know there are no additional therapies for me that will happen intravenously. If there were I would not have asked the surgeon to remove it. She told me her last chemo was last June, but they do take blood samples through her port and she does get it flushed once a month. She has horrible veins, so it’s easier to get her blood samples through the port. I told her that could be why her doctor has kept her port in all this time. Rather than have to poke her numerous times trying to get blood samples so they can track her tumor markers, it’s just easier to keep her port in place. She liked that answer. I understand it can be very scary for a cancer patient who feels like they are on the road to recovery have a nagging question as to why their port has not been removed. Does the doctor know something they are not sharing….?

Grocery shopping finished we went on with our day as normal. I thought I kept feeling a wet spot on my shirt, but I just couldn’t pinpoint where it was. I even went to the bedroom and lifted my shirt to see if there was a wet spot on my bra from my boob leaking… couldn’t find anything.

Went to bed and woke up yesterday morning with a nice wet spot on my night gown. Seems Camilla didn’t tape my outer dressing as effectively as she did with the other tape that tried to pull my skin off and left me with some great red marks.

Hubby said screw that; let’s go back to using the Poise pads! Works for me. But now we have tons of gauze and Telfapads being shipped to us thanks to Camilla. I may be able to open a pharmacy by the time I’m done with all this. Hubby filled the cavity in my boob with the gauze strip, I positioned a new Poise Pad in my bra and on we went with our day. Thursday was also the first day of the 8 week course on Mindfulness that Linda and I signed up to attend. Hubby drove me over and said he would be taking a nap in the car while I attended the first session.

The presenter of our class is a doctor who also has dealt with Cancer. She had a Stage III Sarcoma in her leg. From what we have learned about all the different cancers, Sarcoma is one that is never cured. You can fight it for years, like a “Whack-A-Mole” game. It pops up here, you cut it out, you treat it with chemo, maybe some radiation, and it is gone, only to pop up over there months or years later. Eventually you lose the Whack-a-Mole game. Hubby has a few family members in his group dealing with/lost to Sarcoma. She is very forthright in her presentation. She told us her history; she uses herself and her life previous to her Sarcoma diagnosis, and told us how and why she got into Mindfulness even as she continues to practice as a premier Vitreoretinal Surgeon.

My friend Linda from group was there, and she brought her friend Susan with her. There were a couple others from our support group, along with many others dealing with cancer or family members of those dealing with cancer. It was a great first session. I look forward to our next one next Thursday. I am hoping with some additional coaching in Mindfulness I can gain some better control of my parasympathetic nervous system. I’m tired of my BP dropping, going ashen and clammy and then having to lay down until my BP finally goes back to normal at the most inopportune times. Linda and Susan asked me to join them for lunch, but I couldn’t as Hubby was waiting for me and we had some other errands to run. Maybe next time!

Hubby and I headed to Costco to pick up the last of the items we needed there after we went grocery shopping earlier this week. Then Hubby wanted Del Taco tacos, so we made a stop there too. At one point he looked over at me and said “You look tired.” I was feeling fine so not sure what prompted the tired look. But by 8 PM I was exhausted and ready to go to bed. I hit the sack extra early, woke sometime around 9:30 PM to go to the bathroom and the next thing I knew it was 11:30 AM today. Hubby even said he came in to check on me about 9 AM, wanted to make sure I was still breathing. Guess I was tired after all…

I feel fine now. A little tired still, not sure how I can still feel a little tired after sleeping 15 hours. We received all the medical supplies Camilla ordered for us, so we figured

that meant it was perfect timing to change my stuffing. Hubby pulled out the last gauze and he was looking at the hole and said if he said anything into it, the hole would talk back.  Cracks me up!!! An echo out of my boob. The gauze strip that was shipped to us is 1″ wide, not the 1/4″ wide we’ve been using. Hubby decided we would try it and see how it goes. Today I have 1″ wide gauze in there…

 

 

I cleaned out my emails, had a great email conversation with someone I know from an Industry Organization I was president of, and then called my mom to find out how her remaining appointments this week went. She met with her Radiation Oncologist who understands her desire to have her lumpectomy and her reduction before she has her radiation therapy. She doesn’t want to have to wait 6 months after radiation for her reduction. RO is a little worried about delaying the therapy since that is her only therapy at this point to stop the cancer. She met her Oncologist and they discussed what hormone therapy they will use for her hormone receptive cancer. She also walked mom through the breast tissue and fatty tissue, the ducts and lobes, and what in situ vs. invasive means. She had diagrams which mom really liked. She also met with her plastic surgeon who was wonderful and walked her through everything that would happen including the drawing of all the purple lines on her to show where everything would be placed after surgery. She is looking forward toward the reduction part. She has wanted a breast reduction since her teens. I am so happy for her that she gets the reduction she has always wanted. She doesn’t have a support group there like I have here. I have decided to try and be her support group vicariously. I can relay what those in my support group have gone through, and ask her the questions that our group leaders ask us.

Her breast navigator asked her how she was doing. She is doing well, she has a plan, her surgeon is the driver, but she’s providing the directions. She is very positive that this will really be just a little bump in her road. She was wondering if there was something wrong with her. I told her nope, it’s all her journey and there is nothing wrong with her. Its ok for it to feel and be easy. There have been a few women in our group who felt the same way, but support group is beyond cancer, it’s about getting through life with support while you are dealing with cancer. Breast Cancer is not just one kind of cancer and everyone has the same treatment. Some cancers are easier to deal with than mine. Some are worse – I have a gal with metastatic breast cancer, she takes an oral chemo drug to hopefully control any further spreading of her cancer. And just because mom happens to have a cancer that may be easier to deal with and is getting her something she has wanted longer than I have been alive, doesn’t mean she couldn’t use the help of a support group. When you are dealing with cancer, whether it’s easy of not, life can send you curve balls, or just be life and sometimes that can overwhelm you just a little bit. Support group, friends, family, being there can help you through that. Support group is a group of friends that happen to be experiencing some of the same things you are on top of dealing with life. So I will be the support group when I can. Or at least until I am too tired from my own journey….

 

 

 

 

 

Life is sharing the journey