Yes, I mean FUCKING. Today was my three week follow up with Dr. Goldberg to check on the progress on the healing of the giant cavity in my boob and to get my final release for radiation treatment.
As much as I dread more treatment, I want this over. I know my process will not be done until I complete radiation treatment. I want my life back, I want my body to stop being pummeled and beaten up, I want it to heal and just be mine again. I want to be able to be me again without having to fight every day with the emotional and physical fall out of this fucking boob.
Dr. Goldberg was all excited until she pulled out the 8 to 10 inches of packing strip from the much smaller cavity in my right breast. She didn’t like the look of the fluid that has changed over the past few days, it has become thicker, more blood cells vs. platelets. The cavity has started to fill in with scar tissue, but the last few days we have only noted the change in fluid consistency and no more change in the size of the cavity. Dr. Goldberg said the change in the fluid could be one of two things, either an infection starting to set in, or my wound is trying to heal and it is no longer able to heal without intervention.
I have no other symptoms that would indicate infection. The fluid doesn’t have a bad smell, my breast is not, red, swollen or tender and I do not have a fever. Those are the good signs that this is not an infection. She took a swab of the fluid to send off to culture to be safe. We should have those results within 5 days. She doesn’t want to put me on an antibiotic until we know for sure if this is an infection and if so, what drugs it is susceptible to killing it.
Next she numbed up my breast around the remaining cavity area and proceeded to cut open the hole a little more, explaining to Hubby as she made him watch, that cutting the tissue, creating “fresh” wounds can kick start the healing mechanisms again. She then washed out the cavity really well with saline solution, and swabbed it out really well with gauze 2×2’s, telling Hubby this is what needs to be done going forward. She uses a lot of saline, about 60 cc’s, compared to the 5 to 10 cc’s we’ve been using. She then cut the inside of my breast where it had started to heal already. I felt that cut. She stuffed the cavity with gauze 2×2’s and taped gauze Telfapads over the new bigger opening in the bottom of my boob.
She is also ordering the Home Health Nurse to come back and take over the management of my wound care. I guess we will be hearing from her by tomorrow or something.
I asked her about starting radiation, and that is now put on hold until the boob is completely healed. I had really hoped with the sudden healing over the past two weeks that happened, today we would be told that we could let the hole close up and I could continue on my treatment plan and finally end this process. Move on to the surviving part. Not remain stuck in the treatment, temporary part.
Right now the temporary part is taking so damn long.
So that was a nice kick in the pants. Just when I thought I would be done with this part of the healing process, looking forward to moving forward, we’re told nope, not yet. Body is not done fucking with you yet.
From Dr. Goldberg’s office we did the grocery shopping and then came home. In the mail was a notice from my Health Insurance. Last week I received a letter from my Primary Care Physician advising she was closing her private practice under one sub-group within our HMO and moving to a multi-doctor practice with the same name as the Sub-group she practiced under in my HMO. Ok, it’s still within our HMO so I figured no big deal. Nope, the letter from the Insurance Company says she is moving from one Sub-Group within the HMO to another Sub-Group. All my referral specialty doctors for my cancer treatment plan were based on the sub-group within the HMO that I picked with her as my PCP. If I want to continue to see these same specialists – my Oncologist, my Surgeon, my Plastic Surgeon, my Radiation Oncologist, I have to validate that all those doctors are associated with the new sub-group that my PCP has joined.
If they are not, I can choose a new PCP within the old sub-group, or I keep my PCP and find new specialists. I can call my PCP’s office to validate if any of my current group of doctors are in the new group. Great, just one more kick in the ass.
I didn’t sleep at all last night, so all of this is completely overwhelming to my very bruised and sore emotional state. I have to call the Radiation Oncologists office as well to let them know we have to postpone my mapping and treatment plan until after May 21st as that is when I go back to Dr. Goldberg to check on my fucking boob.
I don’t want to see the new hole in my boob. I saw a lot of blood, and I have visions of this gaping wound now. I am not prepared to see or know any of this right now. I am sure it’s not nearly as bad as I am imagining. Hubby said the hole is just a little larger than it was before at the largest. Back then it was still smaller than the diameter of a standard #2 pencil. Just large enough to push a swab into if you were determined. Now she was able to shove a 2×2 gauze pad into it….
After we ate lunch, I took a nap. A long nap, but that did not really help me feel better about today’s events. I called Dr. Endicott’s office (radiation oncologist) and cancelled my two appointments and explained what is going on. I spoke with Nancy and she will relay the info to Dr. Endicott, and they will get in touch with Dr. Goldberg. I am to call back to schedule my new appointments once I am cleared by Dr. Goldberg.
I then called my PCP – Dr. Levee’s new office and asked about whether all my current specialists are covered under the new sub-group. The hospital and my Oncologist are, but Lisa will have to check on the others. She said it was no big deal; the HMO would give 30 to 45 days to finish up my treatment plans under my current specialists. Yeah, I’m not going to be done with my treatment plans in the next 30 to 45 days, so that is not going to work for me. If I have to change a doctor it’s going to be my PCP right now, not my specialists. Lisa understood that. She will check on the rest of my doctors to see if they are under the new sub-group and someone will get back to me in the next day or two.
I called Linda, my friend from group. I told her what happened today. She listened. She commiserated with me, reminded me that we can do this. Reminded me that I am not in this alone. Told me it was ok to vent out everything. Reminded me that we are more than cancer.
I told Hubby I am now afraid that he will never be able to see me again as his “wife”, he will only be able to see me as this scarred up cancer patient that he has had to care for all these damn months. How I am so embarrassed and ashamed of my body now, I don’t even want him to see me naked, and yet I have to bare to him every day the super ugly boob. I can’t imagine a time I will want to ever bare my breasts to him again. I told him of my hurts, how they drag me down. How I hate everything about me right now. I feel ugly. I’ve never felt ugly before. I feel ugly. I hate my head, I hate my butt, I hate my thighs, I hate my stomach, I hate my boobs. I hate my brain. I hate the neuropathy, I hate that I can’t even wear my wedding rings.
He let me leak tears of frustration and hurt, tears of sadness and hurt, tears of anger. He let the tears of my fear leak out of my eyes. I didn’t want to do this today; he is meeting with a childhood friend tonight before she heads back to Arizona. I didn’t want to dump all of my insecurities on him today. Not when he is getting the rare chance to go out and have fun, get away from being my near 24/7 care taker. I didn’t want him to have to take all this emotional baggage with him on his few hours off. But here I am falling apart all over him again.
We talked about my neuropathy and how much that is still a constant irritating pain in my daily life. He thought, hoped it was starting to feel better now that I was attempting to walk more. I told him no, it is just me trying to take my life back even if it hurts. He was afraid of that and his fear is that I will make the neuropathy worse or permanent by trying to exercise. He said we should go talk to Dr. Sikaria about the neuropathy, see what else we can do to help it heal and keep it from getting worse. What exercises I can do in the mean time that will not irritate it more. I told him I’d been rereading The Breast Book so I could reacquaint myself with my mom’s diagnosis, and the treatments recommended, statistics, and review the chapters on radiation treatment, long term effects of treatments, healing and living after everything is done. The author, Dr. Susan Love, suggested for neuropathy patients they should follow up with a neurologist. He said we would do that. Once I know if I will have to change my PCP or not, we will go from there to get the referral to a Neurologist to make sure we’re doing everything we can to help my neuropathy.
We talked about my weight, how I am now beyond uncomfortable in my body, I now hate it. He referred me back to the neuropathy and we will talk to a doctor about what is the best exercise for me, if a pool is necessary we’ll sign me up at a gym with a pool, or we’ll invest in one of those Endless Pools/Swim Spas. Something where I can take the weight off my feet and hands. We can figure this out so I feel better about me.
As for my rings, instead of trying to get them on my too puffy fingers we can put them on a chain around my neck. I can wear them that way. I never thought of that. This is why I love him. He brings me back out of my head and grounds me, finds solutions I just can’t think of right now. Reminds me this is temporary, this is curable, this is treatable, this is survivable. Mostly this is temporary. Reminds me why I love him. Reminds me he loves me for more things than just a body.
Talking after the bit of crying helped. Hubby asked me if I was better. Not yet, but better than I was 15 minutes before he asked, and eventually that will lead to being really better. It’s just really hard right now to take these little setbacks. I am trying really hard to not wallow in the bad, the sad, the hurt and keep moving myself forward. It’s just hard sometimes, harder than I thought it would be, taking longer than I thought it would, scarred me more than I ever figured, shook me to my core more than I ever imagined.
Hubby told me this year, none of this matters. What matters is I am alive. I will survive this will all get better. And next year I will wonder why I every fell apart. Why I even had all this doubts and insecurities.
After a nap, a little crying, some reassurance, I am back to focusing on what is good in my life. A snugly lap kitty that comes in every night for food and love. A husband that sees me beyond my current physical and emotional state. Family of friends that bless you with reminders that you are a survivor. Friends who care, listen, and even post the best things in FaceBook, and they don’t even know how much they have cheered me. A family that loves me beyond measure and lets me know in so many big and little ways. A job that I love waiting for me, and looking forward to going back to work with people I enjoy so much.
Life is remembering again TCST (mostly Temporary)
Oh, Sweetheart, I’m so sorry you are finding yourself in this pit of despair. My 💔 is breaking at how difficult this is for you. I thank God for Robert’s patience and steadfast love which always grounds you when you are flying around with all the frustrations you are dealing with. I’m there with you in my heart and hugging you with lots of warm, healing hugs. I’m 🙏🏻 that all of this will be over soon so you can be back to all the things you named and more. Please keep reminding yourself that surviving is the best prize for fighting this battle, and you have survived! LYTTMAB!