Stage 4, 4 1/2 year update - still stable/got divorced/dating with a port

conomyself · 12-27-2016, 12:18 PM

Hi everyone, I haven't been on for a long time -- I have a lot of news I'd like to share.

A lot has happened since my initial dx - stage 4, *very* bad... I had so much cancer I went to see a veteran breast surgeon at a major center and she cried...but I told every doctor I talked to that I didn't want any prognoses or opinions on how long I would live, and every single one of them was respectful of that. And dang I saw a lot of doctors!

Here I am 4 1/2 years later - alive and well and living a life that is more fun and full than I ever imagined in my healthiest days, though I went through a lot to get here!!

I have suffered from depression on and off my whole life, but after the cancer it got very intense. I didn't understand why my husband treated me the way he did or why my family offered almost zero support, and I thought there was something wrong with me. I had an excellent therapist and she helped me a lot, but the biggest relief from my depression happened in Sept 2014 when I estranged myself from my step mother (she was like my mother -- my birth mother died when I was a baby -- also my dad passed shortly after my dx). After I kicked that b**ch to the curb I didn't feel depressed for months!! Then it set in again...

One by one I was ending relationships with my siblings as it began to be clear to me how toxic they were for me. My therapist helped me to put myself first and get past my guilt feelings. Then it became so painfully clear to me how toxic my marriage was, I had been avoiding confronting it. The idea of going off on my own had been inconceivable. I remember once, sick and bald, in one of the worst times, a little voice inside saying "some day, I don't know how, I don't know when, but some day I will be free of this."

Well someday came when I decided it did. I strategized, financially, talked to people about healthcare coverage options, worked out business plans and possibilities with the help of some amazing people, and I built up enough hope and belief in myself that I told my husband I was leaving him (we do not have any children so that was not a factor). He has a good side, and he is a brilliant man, and with my illness the last thing I wanted was a contentious divorce. I didn't hate him, he just couldn't handle my situation. But we fought and fought -- he wanted to keep the marriage -- and then finally I was so happy the day I convinced him to accept it, then everything went smoothly and amicably, and he has been very nice about things, which has been so important because I was still getting my treatments (still am), so having only a fraction of a normal energy level, being able to move on my own time was a blessing. This was a little over a year ago, and we are still very good friends, like brother and sister really.

I bought a house not very far away on 5 acres and moved into it in March 2016. My divorce was final in June. In August I met a man who may truly be the love of my life, and we are very happy together. I have started an organic farm and started a jewelry business. In my earlier days I was an engineer, but now I have decided to follow pursuits close to my heart which bring me joy, and I love growing things and making jewelry (among lots of other things

). I have found that with a dramatically impaired energy level I must really stay within that narrow path of what really energizes me in order to be able to mentally keep up. I need to take care that I find ways of doing things that don't require too much physical exertion and so far something always works out for me somehow, with faith! I feel overwhelmed at times, but that is mostly me trying to make up for the 16 years I spent living someone else's passion at the expense of my own so sometimes I feel like I have a lot of catching up to do!

Thanks for reading my story, it has been quite a year! Call me crazy but I did it!!

MY EXPERIENCE DATING WITH A PORT...

Everyone's port looks a little different, but I would say that compared to my met sister girlfriends my port is about the most prominent and worst looking. Anyway, in July I felt I was ready to start dating. I went on match.com and lined up some meetings with a half dozen or so guys.

Before my first date I took care to find a shirt that covered up my port. I had decided that if it was a guy I might want to see again I would tell them about the cancer up front so if he had a problem with it I wouldn't waste my time. I approved my appearance in the mirror and off I went to meet guy #1 at a microbrewery. He was tall, good looking, and friendly, and we smiled and talked a minute and then his eye fell on my port. I didn't realize that when I sat down it peeked out of the top of my shirt. An then there was the little tube that goes up to the vein, that is more subtle but it does show... It felt so awful for me, I felt so self conscious. He suddenly seemed nervous, and I told him I had cancer and it's a device to help my treatments, and that I was doing very well. I did not feel confident at all, in fact I felt scared. Freaking really, inside... Anyway he managed to pull himself together and we had a very good conversation for a couple of hours. He walked me back to my car. I wasn't so impressed by his personality, but he was quite hot so I thought "I don't really know about this guy as a boyfriend, but maybe just a kiss..." lol.

So you know how we all have issues with muscle cramps, etc., and if we have an injury or overexertion it hits us harder and lasts 3 times as long as it used to...anyway, this guy was like a foot taller than me, and when we got to the door of my pickup I turned my head around to see if I would get that kiss and he planted it on me so fast I was twisted all the way around and up, etc, and it had been so long since I had been kissed my body simply would not move! I was like paralyzed in that contorted position for who knows how long? Anyway, somehow I injured a ligament in my right shoulder blade. It was so bad I went to my primary doctor to see if they could do anything for my kissing injury and I got a nice muscle relaxer.

We exchanged appreciative texts afterward but never asked me out again. I felt sure it was the cancer, and I was actually quite traumatized by the experience of him seeing the port and reacting like that. I thought I did not have the strength to meet all of these other guys, and I felt like I couldn't go through that again and I needed to cancel. But after a serendipitously timed therapy session and consulting with a couple of friends and my ex husband, I decided I would be brave and stick with it. This time I planned how I would say it, and I found a shirt in my closet that was flattering, casual, and completely covered the port and the little tube too. My plan worked out great. What I did was I said "See, I have just a tiny bit of cancer." I said it confidently and moved on quickly to the related subject. When they asked I kept it as brief and light as possible.

Anyway, guy #4 was a keeper, and he is now my beloved, so it was all worth it! And he totally acts like the port isn't even there to this day. My breasts look fairly normal, so unlike many ladies I didn't have that to contend with as well. I never had breast surgery, just my affected breast is still enlarged with thickened scar tissue from when it went inflammatory. I'm lucky in that it's not real conspicuous.

Well thank you for reading my story!

Rachael

StephN · 12-27-2016, 03:45 PM

Sounds ALL good! You have put your energy to use for YOU! No one else draining what little you have.

I learned I needed to be a little selfish with my energy, so I could have a better quality of life. Things do not have to be done right NOW!

conomyself · 12-28-2016, 07:23 AM

Yes Steph, i feel that precisely is the key. Thank you for the reply.

Mtngrl · 12-28-2016, 12:39 PM

Dear Rachael,

Thanks so much for the update. Your story is inspiring, and it's really good to hear from you.

MaineRottweilers · 12-28-2016, 04:24 PM

Great story, Rachel. I am glad you are doing so well.

Catherine · 12-30-2016, 10:07 PM

Great story Rachael! All things are possible with an attitude like yours. Your therapist sounds like she was right there to support and encourage you as you stepped up and bravely found a life that was meaningful and rewarding to you. I think everyone should read this story. (Even if they do not have cancer)

I,too, try hard to manage my energy like StephN said. I try to do what is really important to me and let the other stuff go.

All the best, Catherine

conomyself · 01-01-2017, 07:36 AM

Yes Catherine I agree with you and Steph. I try to reserve my energy to fuel my dreams, not to serve others' convenience

Carol Ann · 01-01-2017, 01:14 PM

Rachael, thanks so much for sharing your story! I am so glad you are doing so well!

Carol Ann

TiffanyS · 01-03-2017, 03:17 PM

Hi Rachel,

Thanks for sharing your dating experiences. I am a single gall (never married, no kids), who has not gone on a date since I was first diagnosed last January. I haven’t really put myself out there, as I feel like it wouldn’t be fair to start dating someone when I have a terminal illness, and I’m still going through treatment. Not only that, but I don’t know if anyone would want to get involved with me, knowing that I have a terminal illness and that the chances of me being around in five or ten years are not high. It’s nice to know that you found someone, even though you have cancer. It gives me hope that I may find someone too.

I also think it’s great that you have let go of all of the toxic people in your life, and are doing the things you love. For me, travelling is my passion, and I’ve already booked two trips to Europe for next year. A short one in the spring, and a long one in the fall. I was supposed to go to Europe last September/October, but I had to cancel at the last minute because my cancer came back, and I was told I would need rush surgery (which never happened). The good news for me is that I still have a lot of energy, even after chemo, which means I can do most of the things I used to do. I can’t, however, play sports or go to the gym right now due to shortness of breath and neuropathy and spasms in my feet, but, otherwise, I’m able to do most of the things I did before.

Keep doing the things you love, and enjoy life!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour was located. Scared it’s a cancer recurrence.

conomyself · 01-05-2017, 09:34 AM

Hi Tiffany, I am so glad for you that you can do most of what you did before

.

I am not saying that being in a relationship is better than not being in one, or that it's something people should so or whatever, but I just wanted to say that aside from the first two sentences I could have written your first paragraph myself at one point. I thought I had no business ruining some guy's life with the cancer, and I felt that meeting them would be like a "bait and switch" game, but now I see it completely different (with the help of a great therapist). Even with a chronic disease I still have a lot to bring to the table, but then it's really not even about that...I've only recently learned that good man delights in doing things for us to help us be happy and feel good (and vice versa of course!)

My girl friend also has stage 4 breast cancer and she is in worse shape than me cancer-wise. She has burned through several treatments and is running out of options. She was divorced with four kids and a completely absent ex when she got her dx. Anyway, she decided what the heck and met a great guy at a speed dating meeting and they are having a great relationship! I am so happy for them!

Rachael

Mtngrl · 01-05-2017, 12:15 PM

Rachael and Tiffany,

I was in a long-distance, long-term relationship when I was diagnosed. He is a cancer survivor too, and he was an awesome cancer buddy. Nevertheless, since we were rarely able to be together, and since he was not ready at that time to commit permanently (though we were together and monogamous for 9 years--longer than my second marriage) he kept encouraging me to find someone else, and I made some efforts, but nothing clicked. I'm pretty sure none of the "failure to launch" had to do with my cancer status. He has since moved on romantically, but we are still very good friends.

I agree with you. Especially at my age (62), everyone's susceptible to serious illnesses, accidents, other life-altering events. My whole generation is starting to die off. Friendship and love never quit being important, but we become more selective about it.

I'm quite content by myself. (I have roommates, and adult children, and friends, so I am not isolated or lonely). Any new relationship, platonic or sexual, has to be preferable to staying home and reading a book, or going out by myself or with someone I already love. I am open to that. In fact I'd like it. And I don't think my diagnosis is or should be a deal breaker. I'm certainly not going to make that decision for the new friend or lover. They can decide for themselves.

conomyself · 01-05-2017, 01:02 PM

"And I don't think my diagnosis is or should be a deal breaker. I'm certainly not going to make that decision for the new friend or lover. They can decide for themselves." I like that Amy!

And I agree with you - in my mind a man would have to like farm work and not be a big TV watcher, hardly ever go out and deal with my long hours with a nose in a book LOL I wasn't sure that guy was out there. At this point in my life I am not going to sacrifice anything to please someone, that's for sure! I thought maybe I would find a friend or a casual date but I was pleasantly surprised to find more.

TiffanyS · 01-06-2017, 05:32 AM

I’m glad to hear that people are still dating and starting new relationships despite a cancer diagnosis. Right now, I’m just focused on getting stable. After that, I may start looking to meet someone.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour was located. Scared it’s a cancer recurrence.