My New Norm (Post-Op)

Now at my Mom’s house I was slowly feeling better each day and looking forward to the first time I could lie flat on my back.

It was during this time that the signs of menopause began. I would notice my body temperature fluctuating throughout the night but nothing I couldn’t handle. During the day I experienced many periods of being very cold. I would cover myself in a fleece blanket, in the middle of April.

Understandably, I was becoming fairly emotional. My brother, sister-in-law and niece had arrived for my Oma’s funeral the following week so it was a full house. Not an ideal situation after a surgery.

Facing the reality that all my options for having my own children had now been taken away from me, and not by my choice, was hard. This was the second time I would lose something that made me feel less of a woman, without a say. The emotions I had felt as though it was happening for the first time.

I recall going to the park with my niece one day and I sat there watching her play alongside many other children and their families. Behind my sunglasses my eyes filled with tears. I would never experience this for myself.

I found myself getting upset and emotional at the strangest times. Sitting at the table eating dinner I would go to the bathroom and cry, then come back to the table like nothing was wrong. Nobody knew how I was feeling…or if they did they didn’t acknowledge it. I felt trapped in my emotions.

I had taken a few weeks off post-op to ensure there was time to adjust to any side effects I might experience from my induced menopause. It appeared that most of the possible side effects were happening. Most notably were the hot flashes, night sweats, mood shift, and lack of concentration and memory issues.

Once I started back at work I was really struggling with these things and it made for an incredibly hard transition. I was lucky to get 3-4 hours of sleep a night because of the night sweats. It felt like I had the flu; I was freezing and covered in blankets one minute, then my internal furnace would blast on high and I was throwing the blankets off and putting an ice cold towel on my head. This would happen throughout the entire night, almost nonstop. With so much constant activity it was next to impossible to get any solid sleep. I’d wake up in a fog and then sit behind my computer battling the same issue. The ceiling fan would get turned on and I’d have to remove a layer of clothing before I was freezing and needing to reverse everything. I’m thankful for my patient coordinator who I share an office with.

I was also struggling with a major depression at this point. This is something that can happen when your estrogen is shut down. Going through induced menopause is much more severe than when it naturally occurs. I would wake up crying for no reason, leave my desk to cry in the bathroom, cry at night…there was a lot of crying. I would not see my surgeon for 6 weeks post-op so was unable to get help for any of this.

Between the lack of sleep and depression, I had a difficult time wrapping my head around work. I became increasingly frustrated with my lack of concentration, loss of short term memory and difficulty finding my words. There’s nothing quite as frustrating as feeling uneducated at work. The simplest words or phrases I couldn’t think of. My brain just couldn’t put the words together.

Women experience menopausal side effects, including those listed below, to differing degrees:

  • Hot flashes
  • Sleep disturbance
  • Mood changes
  • Decreased libido or other sexual side effects
  • Weight gain
  • Urinary incontinence
  • Heart disease

Losing estrogen earlier than normal can increase your risk of:

  • Heart disease
  • Osteoporosis
  • Parkinson’s-like symptoms
  • Depression
  • Dementia
  • Premature death

After seeing my surgeon for the first post-op follow-up I wasn’t armed with much information to help me cope. They would send a referral for me to have an appointment at a top menopause clinic in the city, which would take 6 months before I was able to get in. I knew that Effexor was likely the medication they would eventually prescribe so ended up getting this through my family doctor. Effexor is a dual purpose medication. It’s an anti-depressant but is also commonly used in treating hot flashes. Over the next few months I would slowly increase the dose until it had put the depression and hot flashes in check.

It’s hard to know what’s causing what, but since that surgery and going on the medication I have gained 25 lbs. I have heard many women speak about how they gained weight after starting this medication. I certainly didn’t change anything enough to gain all that. I’ve always lost weight after surgeries, except this time.

My ovaries were removed as a preventative measure since my tumours were ER/PR positive, meaning I am unable to take Hormone Replacement Therapy (HRT) or any products that mimic hormones. I would need to avoid certain foods as well, such as soy, tofu, and edamame. These are all soy products that are natural sources of estrogen.

Finding my Family

Knowing that I was in need of some real support from people who understood what it’s like to be in your 30s and diagnosed with cancer, I found a support group for Young Adults. Who would have known I was still considered a young adult?!!

Two weeks after my surgery I attended my first group. An emotional wreck, I sat in a small room with about 10 other men and women and a facilitator. We shared stories, vented, cried and laughed. I left that group feeling the hugest weight lifted off my shoulders. It was the best I had felt in months. I had finally found my family. Some of the group would in turn become great friends who I’m so thankful to have in my life. I’ve laughed more this year than probably any year I can remember.

I found myself starting to really live life and becoming more discerning with who got my time. A lot of people continued to not understand what my life was like, didn’t know how to support my situation, and just plain old disappeared. This is incredibly common with people diagnosed with cancer. I try to remind myself that everyone is doing the best they can with what they have. It still hurts, but I have lowered my expectations of people. And continue to be so thankful for those who are there for me when I need them.

I had decided to register for the 25km One Walk that took place in September as a way to give back to the hospital that was taking such good care of me and to support the very underfunded research for sarcoma cancer. With 50 subtypes and only 1% of cancer diagnosis being sarcoma, you can understand why it’s so difficult to treat. I would have to raise $1,500 just to walk. I was prepared to take on that challenge but didn’t expect anyone else to want to. When my good friend said she wanted to walk with me I actually started crying. I was so humbled that another person wanted to do this for me. The generosity of all those who donated truly made me cry many times. Whether it was $10 or $200, it meant the world. I hit my goal in 1 week. It took us about 8 hours to complete. I would walk the last hour or two on the ball of one foot with the proper use of my right foot. I don’t know what happened but my heel was in incredible pain. It started at the 17km mark but I wanted to finish. Had this not happened we’d have crossed the finish line much sooner. By the time we crossed the finish line I couldn’t even put pressure on my foot. My Mom was there and I had to hold onto her just to walk. I would be laid up for three days. I had injured my plantar fasciitis. I went to a chiropodist and finally got fitted for orthotics. The pain would remain for a month before it finally dissipated. Oh, and I forgot to mention…as soon as we finished the walk, we both signed up for the 2017 walk! I’m a glutton for punishment apparently.

 

 

 

 

 

 

 

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The Last Hurrah!

Getting ready for surgery…

Well, that title pretty much sums up what the past year has felt like. I can’t even believe it’s been just over a year since my last post. I feel bad for leaving anyone hanging after my last scheduled surgery on April 8, 2016. Perhaps after reading this update you’ll understand why.

If my memory serves me right, I should be able to capture what’s been going on. Then again, my memory can’t really be trusted these days so we’ll see how this goes J

I remember the events surrounding April 8th, 2016 like it was yesterday. The weeks leading up I was scared. Really scared. But I didn’t say much about it to anyone. I was positive that I was going to be put under for my surgery and not wake up. You couldn’t have convinced me otherwise. Too many things had gone wrong and it felt like certain life events were getting ready to repeat themselves. While this was a really scary thought, I also felt a sense of calm.

Knowing that this surgery was going to change me I wanted to have one last hurrah before I went under the knife. I took two weeks of vacation just prior and had a great time! I visited family friends in Florida where I spent my days by the pool relaxing, with very little shopping; this is almost unheard of during my Florida trips. I’m pretty sure I came across as anti-social but it was just what I needed. To do nothing.

To balance out the calm that came from the Sunshine State, I then ventured to Sin City with a girlfriend. After all, this was my last hurrah, so to speak, and it would also be my 39th birthday.

We walked, shopped, danced, drank, socialized, lounged, and lived off few hours of sleep; at least I did anyway. The day after my birthday we had gone shopping to the outlet stores and while finishing our dinner at the Cheesecake Factory I got a message on my cell phone. It was my Mom. My Oma had passed away. If you recall, my Oma had been diagnosed with Myelodysplasia (bone marrow cancer) in Fall of 2015 and been really sick. I felt terrible that I wasn’t there but had also said what I knew would be my last good-bye before going away. I would be returning home the next day. Needless to say this was a lot to handle so close to my own surgery date. Her funeral would take place 10 days after my surgery.

Upon returning home I got really sick. Thankfully this didn’t delay my procedure but it sure did make for an exhausting week. I was back at work for a few days to wrap things up before being off for the month.

I cleaned up some personal matters; I updated my Will and drafted a few emails, in case things didn’t go as planned, for a friend to send out. Part of the reason I felt that this would not go the way I hoped was for the simple fact that my Mom and one of her good friends have had many similar tragic life events. They met during Lamaze class and have been friends ever since. My brother and I grew up with her kids. Her two sons were the same age as me and my brother. In 2011 my Step-Father passed away from lung cancer, and about a month later her husband was killed in an accident. One of her son’s lives out of Province and my brother also lives out of Province. Her other son had cancer and sadly passed away. I also had cancer and was positive that it was my time to continue the pattern of events.

The morning of my surgery I was checked in and prepped; routine at this point having been through the process many times before. My Mom and her friend were with me while the various medical team stopped by one at a time to introduce themselves and talk about what would be happening.

It was nice to have my Mom there during this since it normally happens outside the OR in the hallway. I was introduced to two new protocols which I could have done without. First was a shot in my leg for possible blood clotting and the second was a tiny wire that had to be inserted into an artery in my left arm. That bastard of a wire is how they would monitor my blood pressure. I experienced a pain that I can’t even describe and like nothing I’ve ever felt. They attempt to numb the area, but honestly they should just wait until I’m out cold to do it. It felt like the wire wasn’t in place and my entire arm hurt. I was in tears! It was what I imagined it would feel like to have a giant door slammed shut on my whole arm.

Just some of the hookups

The last visitor I would receive was my surgeon. I have to just say, before I forget, that I love her! She is kind and gentle, professional and always makes me feel good. Not to mention she makes some of the nicest healing incisions I’ve ever had LOL.

She stood beside me and said “So tell me what we’re doing today.” They always want to ensure you fully understand what’s about to happen. Before I could even open my mouth I was crying. I was sad. I didn’t want this to be happening. I composed myself and told her I’d be having my ovaries removed and one remaining tumour.

As she began reminding us of the surgical plan and some of the possible roadblocks that might occur I was too exhausted to even care. It was at this point that she mentioned the tumour was very close to my bowels and there’s a chance I might need a bowel resection and possibly an ostomy bag. Oooooooh joy. I certainly was familiar with what that meant; my Step-Father had one from his colon cancer days. Yes, he had two cancers. But what could I do or say at this point. It would be what it was going to be. After the fact, my Mom told me that she didn’t think I heard her because I gave no reaction. She was freaking out inside but didn’t want to say anything at the risk of me realizing, and getting upset.

I would wake up in the recovery room after what was an uncomplicated surgery. Hungry for food my Mom brought me a bagel with butter. Sadly it didn’t taste as good as I’d imagined. Hot tip: don’t eat bread after surgery; it’s tasteless and pasty.

I was in discomfort almost immediately. I had pain in my shoulders and was told it was from the gas they pumped into my abdominal cavity. I have had discomfort from this before but it’s always in my stomach. I walked around a bit to get the gas moving but no luck relieving the pain. I was also unable to urinate. I would stay in the hospital overnight, with a catheter, and attempt to use the bathroom in the morning. After a horrible night of no sleep (thanks neighbour) I had success! You know you’ve had a few surgeries before when your Mom says to just text her when you’re dressed and she’ll pick you up at the entrance LOL.

We stayed at my condo for a few days before relocating to her place. Frustratingly, the shoulder pain did not get any better and would be with me for about 7 days. Once again, it was a pain I’d never felt before! I was unable to lie on my back for almost that entire time. I had to prop myself up on the couch since lying down seemed to cause my abdominal muscles to spasm and amplified the shoulder pain.

Every now and then my Mom would try to help me partially lie on my left side so that the gas could shift. Just as I thought I might have found a position I was hit with excruciating pain. It was the sort of agony that got worse with crying and deep breathing. As soon as I realized what was happening I yelled “Get me up! Get me up!” I heard a sound coming from my mouth that mimicked a combination of screaming and crying, only making the pain worse. This would happen a few times over the next few days.

Confirmed!

February 24, 2016

This was the last appointment I would have with the surgical department. Relieved that after two months of appointments I had made a decision and would just need to confirm with the surgeon and book the date.

I met my Mom at the hospital that afternoon; I was across the street at another hospital just prior for a work meeting. So far I had been pretty lucky with my appointments running on time and was eager to get in and get out for this final one.

It had already been an emotional week with my final writing class at Wellspring on the 22nd and an orientation at Gilda’s Club that same evening. I was still crying a lot and hoped by now that the tear well would be running dry. That would just be too easy. I was glad to see that at Gilda’s Club they had support groups for survivors in their 20s and 30s. I think this is just what I’ve been needing. There would finally be a group of people in my age bracket who could understand the fears and emotions that I had been struggling with and the challenges of going through something like this at a prime stage in my life. More and more I’m realizing how increasingly difficult it is to talk to people about the status of things because the history has to be given to ensure they actually understand the situation. It’s draining. They don’t get it. And it’s exhausting. More and more I think I’ll just be telling people that I can’t talk about it one more time and to just come here to find out what’s happening. But I’m digressing.

So we waited in the clinic waiting room with just two other patients. Suddenly the room filled up with almost every seat being taken. The other clinic location was closed for the afternoon, I think, so everyone had to come over to this one. About 20 minutes after my scheduled appointment time we were taken into the room. And there we sat for 1 hour. There is nothing more frustrating than sitting in a chair with absolutely nothing to fill your time with.

Feb 24,2016

The original surgeon I had met with at my first appointment came in and the meeting was no longer than 10 min. We confirmed that I’d be moving ahead with the surgery as recommended – tumour and ovaries. I had also requested a chest x-ray since we hadn’t done one in January. I figured if I’m going to go under the knife we might as well make sure there were no new tumours anywhere else. Granted, it would be a totally different surgery and surgeon if there was something. I just wanted to be sure. I was handed the consent form and made sure to read it before signing. After going through a surgery that ended up causing all of this you’d bet I was going to make sure I knew what I was signing off on this time.

We were then ushered out of the room for the next patient and sent to another space to meet with the booking person. She came in and at the speed of light handed me forms that covered instructions on surgery prep and info about where to check in. Apparently she wouldn’t be able to book my surgery then and would have to get back to me. When, I asked. She didn’t know but thought it would be sometime the following week. And just like that, after an hour and a half I still had no concrete answers. I couldn’t help but start crying as we walked through the hospital concourse. I hated that my life and schedule was in the hands of someone else. I’m a planner and Type A personality so not knowing what was happening when was incredibly frustrating. I have lots of responsibilities at work and needed to plan accordingly. I had to ensure there would be no issues at work and I’d have time to close out as much as possible before going on leave. She also wasn’t even sure that the surgeon I was told would be mine was going to be available. This made me even more frustrated.

I was scheduled to go to another class at Wellspring that night, this time for cooking, but just couldn’t do it. It was already such a long week.

 

On March 1 I finally got the call with my surgery date. April 8. I’d go in for pre-op on the 4th and then would need a day for surgery prep on the 7th. My plan had always been to take 3-4 weeks off to properly recover this time. Last year I was working from the hospital and from home the following week. This time I wanted to ensure I had no other mental distractions and could allow myself to deal with all that might be thrown my way going into instant menopause. Plus, they’re telling me this would be day surgery and I’d be going home the same day. Uhhhh…..seriously?!! FYI, I’ve never gone home same day. The shortest stay I think I’ve had was 4 days. There’s nothing worse than the feeling that that your incisions will burst open from the slightest movement. I couldn’t imagine getting my butt into a car hours after they’d sliced me open.

I also have 10 days vacation left for the year so decided I would take a holiday before the surgery so I could really enjoy the last bit of being me as I know it. I booked 5 days in Florida to visit close family friends and the day after I return I jump on a plane to Vegas with a girlfriend. Really looking forward to a true vacation with no commitments.

I find that as I get closer to the date and things sink in even more I am getting very emotional about the fact that I will never have my own offspring. I will never have the opportunity to even have the CHANCE of using my own eggs. It makes me really sad. It makes me sad that my life is not where I had hoped it would be at this stage. That I have to go through this alone.

I will try and provide an update once I am in recovery and a little coherent. And if you can send some positive vibes this way on April 8th that would be swell 🙂

Love you all.

New Year, New Hope…or…

January 5, 2016

After returning home from two weeks out West, it was time for the dreaded CT. I was feeling pretty positive, though, going into it. Unfortunately, I got hit with a stomach bug just before New Year’s and was still not feeling great. I was told it wouldn’t affect the scans and we could proceed.

I went on my own again, and this time enjoyed an orange flavoured radioactive cocktail! Mmmmm….still haven’t decided which I prefer. The usual drink tastes just like water. I appreciated the variety this time 😉

 

January 12, 2016

Feeling confident, my Mom and I arrived at PMH for 8:30am. First was my bloodwork appointment, followed by a chest x-ray and finally my oncology appointment to review results. I can’t say enough how impressed I am with the smooth operations of the hospital. By the time I got to my appointment almost all the blood work results were back. Remind me again why it takes a week when I go to a lab? Bloodwork was good! And x-ray got cancelled because the specific order hadn’t been put through, and since I just had one in November she didn’t see the need. I would get in early to see my oncologist. After going through the usual check in process we sat and waited.

My oncologist walked in with the CT report with lines on the pages highlighted in orange. I knew right then that this wasn’t good. She sat down and told us that there were no new masses which was fantastic news, but that one of the spots we initially thought was a hematoma, and had evaded the MRI scan somehow, had not changed from last summer’s CT. The other area continued to shrink. She said the MRI hadn’t caught the area where this mass was and that it was picked up on the CT scan. The tumour board remembered my case and suggested I get a surgical consult with the gynecology oncology surgeon for another opinion on what to do.

In my mind, there was nothing to do. I thought, why don’t we wait and monitor it. Who’s to say it’s not still a hematoma that isn’t healing at a different rate than the other one? The idea of having another surgery again was the last thing I wanted.

CT results: Below the level of the aortic bifurcation, there is a 2.5 x 2.5 cm nodule. Previously this measured 2.6 x 2.2 cm. Along the lateral aspect of the proximal right colon, there is a low-density ovoid structure, now 1.5 x 1.1 cm, previously 2.8 x 2.2 cm on most recent CT. The MRI suggested that this represents a postsurgical hematoma. A sub-centimeter aorta caval node appears stable. Small mesenteric nodes. No significant lymph node enlargement.

 

January 27, 2016

There was a little confusion upon checking in for my appointment at the gyno clinic as there was a surgeon switch for who I’d be seeing. Thankfully all was worked out and my appointment time was correct, but with a different doctor than originally planned. I met with the nurse who did the usual routine and the first doctor (not sure if she was a surgeon) came in to take my history. There’s a lot to go through, and it’s not straight forward (more details than what has been covered off through this blog). She then had to debrief the surgeon who would meet with me next. Because my Oma had to have a blood transfusion that same day just after lunch, my Mom had to leave after we met with the first doctor. I was now on my own. The lonely feeling crept up on me again. After a half hour wait, the surgeon came in with the nurse and doctor. She completed an exam and then we spoke about next steps. They would also meet with their own tumour board in a few days and the next time we met they would have a full recommendation for me. At that time she felt that we needed to operate, removing my ovaries and the remaining tumour. Menopause! 😦

Being the difficult patient I think I can be, I questioned the approach. At this point I was having a hard time just taking direction from doctors, after everything I had been through. Having trust for the medical profession is very challenging for me these days. I asked why we couldn’t just monitor it. If it’s not a new growth how will we ever know if there are still cells in my body if we went ahead and took my ovaries? Why not wait and then when something new appears attempt to try the medications that would put me into menopause to test the theory and If it worked by shrinking the mass, THEN we operate? From an outside perspective you must be thinking, why the hell would you wait. Take the suckers out and be done with it. Even though I know having children isn’t in my future, having the ovaries still allows me to be able to have kids, just through a surrogate. At this point in my life I know it’s highly unlikely this will be happening…but it was all I had to hold onto. How would this final decision affect my dating life? How would it affect me? I was pissed that my hysterectomy had now lead to all these added complications, and potentially a shortened life span. As though that surgery wasn’t already hard enough to deal with at 32 years of age, now everything that makes me “a woman” was being taken away from me. And with my luck I would get all the side effects that come along with menopause – hot flashes, night sweats, anxiety/mood swings, osteoporosis, heart issues, low sex drive, etc. As if being single and dating at this age isn’t hard enough! Yes, I realize my priorities were in the wrong place. I’m angry. I’m sad. I’m overwhelmed. I just want my life to be normal with no more health roadblocks.

She said she wanted me to come back the next week to see them again for further discussion.

 

February 3, 2016

Back for my second follow up appointment, with yet another surgeon who would actually be the one to oversee my surgical care moving forward, as last week’s surgeon would be leaving the hospital soon.

I met with the same doctor from the previous week to go over a few things and she confirmed that the tumour was actually sitting right underneath the main Aorta that then splits left and right.

anatomy_of_aorta

She said that they would not operate on this but would take the ovaries. When the new surgeon came in she corrected her to say that they would in fact remove it as well. Needless to say it makes me really nervous to know that they’ll be operating in an area so close to a main artery and my bowels. Given my history of fibroids not just being close to organs, but encasing them, I’m happy that it hasn’t gotten to that stage. If so, it would be inoperable. It’s still terrifying. I’m a pretty optimistic person, but I can’t help but wonder if I will make it out okay. They would attempt the surgery laparoscopically (using a few small incisions in my abdomen) and depending on how much access they will have to this area, may end up having to do open surgery. I was fine with this since that’s what they did in June, and the incision was healing nicely, although taking a long time. It would be somewhat discreet, like most C-section scars are. She then told me that because of the location and need for access, they’d have to do a vertical incision through my stomach. Fan-freaking-tastic! Another war wound to add to the collection. How difficult would this one be to recover from? What horrendous scarring and scar tissue or adhesion problems will it cause? At the end of the day, it is what it is. I know this.

The question I wanted answered in order to feel comfortable with the decision to remove the ovaries was, what percentage of my tumours were estrogen and progesterone positive? They were ER/PR positive but I was never told the percentage. If it was high, I could be in support of removal. But if it was low, why would we jump into a surgery that might not even prove to benefit the situation. She told me that any report that shows ER/PR positive means the tumours are at least 85%. That was all I needed to hear.

I would follow up with my oncologist on February 9th to discuss the appointment and then see them again, one last time on February 24th to finalize the details.

I’m exhausted.

 

February 9, 2016

I was planning on seeing my oncologist solo today, with my Mom joining via speaker phone. Unfortunately, my Oma had to be taken to emergency yesterday so my Mom had to come into the city to be with her and stayed overnight with me. So now I’d have a buddy beside me during the discussion.

My oncologist said she had a chat with the surgeon about the recommendation and was essentially on side with the approach. Again, there are no studies or common practices with this Cancer so everything we’re doing is just an attempt at preventing further recurrence. She felt pretty confident that this would come back at some point, that because there were multiple masses in my pelvis last year, she didn’t feel that was all that remained. It’s just how this Cancer works unfortunately. My hormones needed to be shut down. I’m sure my Mom is tired of my constant questioning of the doctors but I just have to talk through what my brain is processing and thinking, so that I know I’ve thought through all approaches. Those who know me know that I’m not a “yes” girl. I question the status quo.

My oncologist said we essentially have a few options.

  1. Do nothing and monitor.
  2. Start the medications which would shut down ovaries and another to stop additional estrogen production that naturally occurs in our bodies. No surgery.
  3. Operate and remove just the tumour.
  4. Operate and remove the tumour and the ovaries.
  5. Operate and remove the tumour, ovaries and go on the medication to stop remaining estrogen production.

The medications are EXPENSIVE! As in close to $1100 for one of them, each cycle. I could never afford to do this until I naturally went into menopause. We essentially decided on plan number 4. Perhaps after I had time to adjust to being thrown into menopause, not eased in like most women, over a few years, we could determine if it was worth-while for me to also take the other medication. Pathology of the tumour and other surgical findings could aid in this decision.

Again, a little teary eyed from all the internal conversations, endless research, revisiting of all my reports to make sense of things, and now rehashing it all to write this blog…it’s wearing me down. I’m glad that this is now up to date and it will just be a matter of updates moving forward.

Side Note: While it’s not related to my personal health situation, I thought it was worth providing updates on some of the other insanity happening in my family at the same time. I had mentioned previously that my Oma was also diagnosed with Cancer around the same time as me…and that she was taken back to the hospital this week as well. At 11:30pm I got a call from my Mom. The hospital had moved my Oma up to a room from Acute Care. But she was flipping out. She was hallucinating and throwing her slipper at the nurse, convinced that she was taken somewhere and they were doing tests on her. She is 93 but she is so mentally with it you’d have no idea. She does not have Dementia…she does not have Alzheimer’s. We were really worried about what was happening. My Mom had just left her that afternoon and she was fine. So I called her to see what was happening…she was slurring and talking about what they’re doing on the 4th fl. I told her I was coming in a cab right now to see her and we’d figure it out. I was not prepared to see her in that state. It was so beyond frustrating to know that she isn’t like this normally and the nurses really didn’t give a shit. They probably thought “Oh another crazy one”. Nobody really seemed like they wanted to help figure out why she was having this reaction. Long story short, I stayed the night and slept in the chair beside her bed to make sure she was going to be okay. My Mom arrived in the morning and I then went home to sleep. Days later she remembered everything that happened…it was a reaction to all the meds she was taking.

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(On February 16th, my Mom called me at work to say that they’re moving her to Palliative Care. So now we’re preparing to pack up all the stuff that was just moved into the nursing home for her, and facing the hard fact that she’s never leaving the hospital)

 

That’s it for now…signing off until end of February!

Moving Forward

September/October/November/December

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The Fall of 2015 was not an easy one. Having spent my entire summer with really no answers and creating even more confusion than I expected, I just wanted to get back to normal living. I had been studying part-time at Ryerson since the Fall of 2012 and only had one more class to finish before I would finally graduate. I made the decision at the end of August that I would forge ahead, regardless of what may take place in the coming months, and get that last class under my belt. It was still early on and I figured if I had to do any sort of treatment it wouldn’t be starting until late Fall; I’d be able to get through most of the program by that point and was sure the teacher would be flexible if I needed him to. I signed up and on September 16 attended the first, of my last, class! Having this cleared off my plate before the holidays would be a huge weight lifted off my shoulders after three years, and one less thing to stress about. I also decided to reach out for community support to people who actually understood what I was going through. People who wouldn’t tell me to “just think positive” or “have you tried cutting sugar out of your diet”. I booked an appointment at Wellspring Toronto to become a member and start accessing their free programming. Organizations like this are a true Godsend! Wellspring is a network of community-based support centres offering programs and services that meet the emotional, social, practical and restorative needs of people living with Cancer and those who care for them. This organization is able to offer programming throughout Ontario because of generous donors.

 

Sept 18, 2015 Ther Touch

I found that through my intake appointment at Wellspring, and during other counselling sessions, that I had a real struggle allowing myself to feel worthy of support. In the grand scheme of things I felt that I had it pretty easy compared to a lot of other people I know. I felt guilty going in for services and programs. Were people wondering why I was there? I didn’t look sick. I hadn’t lost my hair. I didn’t have chemo or radiation. I had a surgery, not because I knew I had Cancer. It was all just coincidental. I have to wonder if the over simplification of my situation by some of those around me has helped in feeding this belief. The people who would say things like “Why are you stressed? They removed the Cancer already.” It took some time and I’m now finally just starting to believe that it’s okay for me to get support. Even if I don’t look or feel sick, the emotions and mental process I have to go through are the same as everyone else. And because my Cancer is very rare, there are no studies or common practices to treat it…really just a handful of options and a shot in the dark. I deserve to be supported because my fight is just as important as everyone else’s.

I had participated in Reiki in the past and thought this would be just what I needed to help calm my rapidly moving mind and settle my nerves, allowing me to decompress. I called to book an appointment (you’re allowed to have 3, and are then placed on a waiting list) and had my first session on September 18th.

I arrived for my appointment, sitting in the waiting area to be called in. Again, the reality continued to sink in as I saw in the chair surrounded by a library wall of resource books. I scanned and not surprised, found nothing about my Cancer. Always in search for more information, it didn’t seem possible. Sarcoma is rare in itself, then compiled with the fact that it wasn’t a contained uterine Cancer, it was even harder to find information out about treatment and options. I was called into the session room and chatted a bit with the therapist. Since I hadn’t really had anyone to talk to about what I’d been going through, other than surface conversations with friends and family, I found myself just unloading everything on this poor individual who was simply there to help with my energy flow. I’m sure she was used to this happening, I said to myself. She explained that the session would be about 40 minutes and I would get as much or as little out of the experience as I allowed. If your body and mind are open to receiving this type of therapy you can really benefit from it, however, if you’re closed off you won’t notice anything. She said I might feel differently that same day or in the next few days, or I might not feel anything at all. Prepared for what I thought would leave me feeling I just left a massage table, I climbed up and got settled in. She started walking me through visualized body relaxation which would then get me in the right frame of mind to begin. As she gently touched my elbows and softly spoke to me, I felt a lump in my throat. Trying to think it away, it was like holding in a cry that desperately wanted to come out. The lump got bigger and I felt my eyes welling up. It’s the strangest sensation when your eyes are closed and you’re trying so hard to not let the tears release. Eventually the dam broke and the waterworks started. I cried for about 10 minutes while she worked. I couldn’t stop. I’d never had such an emotional experience before from a treatment. I’ve heard that people often break down while getting a massage when they’re going through a difficult time with something, because of the release of the tension. It had never happened to me, so I didn’t expect this at all. After the session was done we spoke about it, she said that it felt like I was holding back at first, before the tears started. I really feel that whatever I had been holding onto for those two months was finally being released. The emotional blockage that kept me strong for so long had been set free. I would go for two more sessions, and each time it got easier. That said, I became an emotional wreck right after this first session, and it continued for months. Even now, I cry at the drop of a hat when I talk about it too much or have to start getting into details when discussing with people who just don’t understand the complexity of the situation. It’s so mentally draining and I can’t handle it anymore. I guess this was part of the reason I decided to do all this writing. It’s hard to remember who I’ve told what to, and I don’t have the energy to update everyone individually. It’s also incredibly cathartic just knowing that others now have this information, even if we don’t talk about it; I’m not just walking around being the keeper of my feelings.

It was about a week after this initial session that all the other crap began. First, I got what I thought was a really bad cold. Then a few days later a rashy area appeared on the back of my neck that gave the sensation of a scratchy shirt label rubbing against my skin. I knew my family doctor wouldn’t know what it was, so I called the dermatologist to make an appointment right away. She told me what she thought it was and then called another colleague in to confirm. They diagnosed it as Shingles. I had actually had Shingles as a child, oddly enough, so this didn’t really freak me out. And it wasn’t that bad yet, so I was feeling positive. I went to see her two days after the first signs and was put on viral meds right away, for a week. It went away with no further complications. I assumed my body was just more susceptible to colds, flus and infections because my immunity had been shot for who knows how long. I also had other really bizarre bodily reactions – welts on my arms, peeling fingertips and my palms burned and itched.

 

On October 14th I went in for my MRI follow up. This was the first time I had had a contrast MRI, with an IV. Nothing really new to me at this point. I was used to be poked and prodded so I just went with the flow.

 

I remember feeling not fantastic after the scan and had a long sleep that night. By the 16th, Friday night, I was really not feeling good. My temperature began to spike late at night and I had sore joints and chills. I thought perhaps it was a reaction to the contrast die, but they had said it would cause a skin reaction if anything. That didn’t happen, but I wouldn’t rule anything out. I wasn’t exactly having the best luck. The weekend continued with a strange array of symptoms. Fever only at night, chills/sweats and then the fever would break, sore joints (fingers, elbows, knees) and the need to sleep. The following week, on October 21st, I would go back to see my oncologist for the MRI results. I mentioned that I had been feeling sick. She said these symptoms weren’t associated with anything on this front and if it continued, to see my family doctor.

The MRI scan came back with good news! The two areas that were previously detected in the August CT scan appeared to be hematomas (surgical healing) and we would now continue to monitor every 3 months with a CT scan and chest x-ray. AMAZING! While this was an incredible sigh of relief, it opened the emotional flood gates yet again. I was later told by a discussion group I belong to that it’s often when we get good news that the protective walls come crashing down. This is when we can finally become vulnerable to what has been happening. It’s a time of finally feeling safe. They were definitely happy tears, but also tears of exhaustion. My oncologist came back in the room after stepping away for a moment and saw me crying. She inquired about whether or not I wanted to speak to someone at the hospital for counselling. Even though the news was good, I thought it was a good idea to have someone who could empathize with what I had been going through. Until you’ve gone through an experience like this, you can’t possibly imagine the feelings, thoughts and emotions that accompany it. She said she’d put a request in for me to see someone and I’d hear from their department. I also learned that another woman in my night class was just getting back into the swing of things after her own battle for the last few years. It was meant to be, me taking that class. She directed me to another great online discussion board for young adults living with Cancer. They would be a great sounding board for the day to day struggles and triumphs I would encounter.

After the oncology appointment on October 21st, we went to visit my Oma who had also been really sick since the end of July, and at this point was now in the hospital because she couldn’t take care of herself and had been waiting to see a hematologist since Summer. We shared my good news with her, and she informed us that the doctor confirmed that same day that she had Myelodsyplasia (MDS – bone marrow cancer). At 93 years of age, she would have about a year. Her options were chemo, 7 days every month for the rest of her life (which would give her a couple more years), or blood transfusions when needed, to keep her energy up over the next year or so. She eventually decided on the transfusions and is now living in a long term care facility.

Continuing to not feel good and with the fever coming and going, I decided to go to a walk in clinic that weekend. I first tried the pharmacy to see if they thought there was something over the counter I could take, and upon telling her my recent health history she insisted I get to a clinic and if there wasn’t one open, to the ER. The one closest to me wasn’t taking any more patients for the day and the last thing I wanted was to sit in an ER, so I went to a clinic further away and thankfully got in. I briefed the doctor on my health history and latest updates. He started questioning the decisions my oncologist had made about a scan, and honestly, this was not what I needed him to hear from him. It’s overwhelming enough without having a walk in doctor talk to me about treatment and monitoring for something he doesn’t deal with. Anyway. He said I’d need bloodwork but recommended I have it done through my family doctor as they’ll have info on file to compare the results to. Another week of waiting…saw my family doctor on October 30th. By this point my tonsils were now inflamed with white spots, and her initial thought was Mono. I had had it before, but this didn’t feel at all like what I knew it to be. Now over two weeks of being sick I still had no answers. I did the bloodwork and found out the following week that my liver function was off and white blood cell was high; I was fighting an infection. I was sent for an ultrasound on November 9th and also a chest x-ray on November 11th. While the oncologist didn’t think this had anything to do with my diagnosis, my family doctor wasn’t sure what could be causing this. She reached out for her opinion and was also preparing to contact an infectious diseases doctor because she was baffled. So they agreed that I could go for an x-ray to just make sure there was nothing happening in the lungs. On November 16th I went back to my family doctor and was told I had Cytomegalovirus infection (CMV). It’s in the same family as Mono and like any virus can affect anyone, although because of my weakened immunity I was more prone to getting it. The fact that I was literally living off of 4 hours of sleep each night, from the time I received my diagnosis to the time I had my MRI follow-up, surely hadn’t helped build my immunity. The sleepless nights were the worst. Just laying there. Constantly thinking. Not able to rest my mind.

Nov 10, 2015b

While in the thick of all that happening, I went for two counselling sessions at PMH with a social worker. I find these sessions a bit challenging at times. I have someone there, dedicated to listening just to me. Again, the guilt arose. I talked about how I was told I was essentially in remission but I still felt a sense of being lost. Not knowing where to turn to for support. I knew how I should be feeling and that guilt wasn’t supposed to be one of the emotions. She empathized with all that I had gone through in the last 5 years, above and beyond just this, and that I needed and deserved to be taken care of. We talked about resources available, almost to the point that it felt overwhelming. I was dealing with so many emotional and physical effects now that the thought of talking about my situation even more was frankly exhausting. I would be connected with a young adult counsellor who provided more information to me, and I would sit on it all until now. It was just all too much to deal with and I needed a break.

So after a month of being sick, and continuing to go to school, working on a big conference and dealing with all the other life dramas one deals with, I found out what was happening. It had to run its course and I would need lots of rest. Clearly something I wasn’t getting. After about 6-7 weeks from the onset, I was feeling back to normal. I would do bloodwork in December to ensure my liver function was on track, and all came back clear.

Thankfully December was smooth sailing for the most part, and after 6 months of non-stop madness, made myself the priority. Not everyone accepted this choice and the need to do what was right for me, but I didn’t care. If they couldn’t understand and support what I needed to make MYSELF better I didn’t need to deal with it. I would head West to visit family for the holidays and upon returning home it would be time for my first official CT follow up.

New Hope

August 25, 2015

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Most of what took place in August is a bit of a blur. Thankfully I got in to see my new oncologist at Princess Margaret Hospital very quickly. She was phenomenal. We walked into the Sarcoma Clinic at PMH for a 9am appointment. I’ve never seen a hospital run with such precision. As I previously mentioned the feelings I had upon first walking into the Odette Cancer Centre, the feeling walking into PMH was ten-fold. An ENTIRE hospital dedicated to treating people with Cancer. Patients sitting in chairs while an IV in their arm feeds them potent chemotherapy drugs. Masses of people filling chairs at the blood lab waiting for vials to be filled.

We walked into the clinic and either upon arrival or departure I remember being amazed at how packed the waiting room was. This was incredible, to see so many people affected by this disease. It drove home the harsh reality that we walk past so many faces on the street having no idea what their struggles are.

I was instructed to fill out DART, which is the same type of health tracking I had to do at Odette Cancer Centre. It asked questions about my wellbeing, energy, appetite, mood, etc. I would fill this out every time I came to the hospital for an appointment and would also receive an admittance bracelet. I recall the intense emotions that overwhelmed me as I filled this out in my chair. I was feeling great, physically, but I was so overwhelmed. Lost. Confused about my treatment and my diagnosis. My eyes welled up as I checked off the boxes on the portable iPad. My Mom sitting next to me, I tried to not to let on how emotional I was.

We were eventually escorted into a room and a wonderful nurse came in to get a little background on my situation, took my temperature, weight, height and blood pressure before the oncologist came in to meet with us. She was warm, with a soft, soothing voice and incredibly patient, spending an hour with us explaining what was going on. Being the type-A personality that I am, I came prepared with copies of all my pathology reports and clinical notes that I had on file from Sunnybrook and my more recent surgery to give to her. I wanted to make sure they had access to everything they could possibly need to review my case. She explained that I in fact DID have Cancer, and it was Stage 3. Far from what I was told by Odette Cancer Center when I was informed I “barely had Cancer”.

I was automatically Stage 3 because my Cancer cells were not contained. Due to the procedure used on me for the hysterectomy it had spread uterine cells throughout my pelvis/abdomen, so this created a more serious situation than if it were contained in one organ. Again, thankfully it was low-grade and slow growing. However, because of this fact it also couldn’t be treated by chemotherapy or radiation. I had been reading about women who went through these treatments and initially couldn’t understand why it wouldn’t be an option for me. Treatment for me would consist of surgery. If anything were ever to re-appear we would try medication, Letrozole, to stop hormone production in my ovaries and see if it affected the tumor. This was the essential method of treatment since my tumours were estrogen and progesterone positive

Because this Cancer typically first spreads to the lungs, she wanted to go above and beyond the chest x-ray I had in the summer to really check things out. Great! I was finally being taken care of. However, keep in mind that a CT is equivalent to about 100 x-rays. Every time I had scans I was putting myself at even more risk of the scans now causing Cancer. But this was the necessary evil I had to do in order to monitor my very rare Cancer. By this point I already had two abdominal CT’s and now was about to have a chest CT.

As soon as I walked out of my appointment I went to the check-out counter and was handed a piece of paper that had my chest CT appointment information. When they handed the slip of paper to me I noticed the date and time. It was late at night on the Friday. I told them I wasn’t going to be in town and needed another date. Because my girl’s weekend trip had to be cancelled due to my initial surgery in June, we had rescheduled it to now be this weekend. I needed to get away. I had to have some fun and escape from reality, even if only for a few days. They told me I’d have to go to the CT office and check if they could find another time. We went to the next floor and inquired. They told me that was the only time, due to a cancellation, that they could fit me in. Because the tumour board was meeting to review my case on the coming Monday, they needed these results for the review. I walked out of the CT office in tears. I just wanted to go away. I was so tired of life being put on hold because of this. I was emotionally exhausted and frankly, I know I was acting like a child, not putting my health first. This was the start of my decline, and the realization that I had a lot of pent up emotions that I’d need to deal with.

I would end up going to the CT appointment on my own as there was no point dragging someone to the hospital for what is usually a 5 min scan. Usually with CT scans you are required to drink a radioactive cocktail an hour before the scan so that it will show contrast of organs and possible tumours. If I remember correctly, this one did not require the magical drink. Even though these appointments can be brief, it’s very isolating and a smack to the face to be sitting there alone…thinking about the reality of it all.

The tumour board met on the Monday evening and I received a call right after from my oncologist. She told me that my chest CT came back clear (Amazing!) and that the team felt that the two masses detected through the CT scan done by Odette Cancer Centre were in fact hematoma’s (healing from the surgery). They recommended following up in 6 weeks with a pelvic MRI which would help to decipher with more clarity, what these spots were. So now the waiting began. I would be in stand-by mode until the middle of October.

Like Hitting a Brick Wall

July 29, 2015

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My appointment was at 11:15am. We walked into the Odette Cancer Centre and I was floored. I’d never been in a building that JUST treated Cancer patients (I had actually been there before when my Stepfather Larry was sick, but did not see this main floor). It was packed. Every seat taken and a huge line up at the central Registration Desk.

The process was efficient and they had me fill out a survey that would be done at the beginning of every appointment. The survey asked questions about my mental and physical state, stress and anxiety, questions about life, faith, energy levels, etc. They use this to track side effects from medications and overall wellbeing.

We found two seats and waited a short while to be called in. I had expected to be there for at least an hour before being called, but it was surprisingly quick. As I sat there, looking at all the faces surrounding us, I couldn’t help but think about Larry. My only exposure to the Odette Cancer Centre was at the time Larry was receiving his rounds of intense radiation in 2011, a month before he passed. I couldn’t help but think how tragic this was that now I was sitting in the seat not knowing what my future held. I often found comfort in going for my various appointments at Sunnybrook because it was a place that we all had shared for so many reasons. Strange, I know.

Upon being called in, they took my weight, height, checked my blood pressure and temperature as well as some medical history. A nurse and two doctors sat in the room as we reviewed my case. I had done some research on the oncologist in advance of my appointment to find out what others had said about him. They were pretty accurate for the most part, but I really appreciated his straight forward approach.

I had an ultrasound prior to this appointment as a follow up to the surgery, as well as bloodwork to check my hormone levels (which came back in normal range).

He started in right away – I had a rare and untreatable cancer that did not react to chemotherapy or radiation. The only treatment was through surgery. The ultrasound had picked up two small masses in my pelvis and he wanted to remove my ovaries right away. I would be sent for a chest x-ray because that’s the first place this Cancer spreads and would have a follow up CT scan on August 12th. He said they would monitor me every 6-12 months for up to 5 years.

That’s when I hit the brick wall. This was now my new reality. After listening to the CBC report talking about an average life expectancy of 5 years and then to hear him say they’d monitor me for 5 years, it hit home. I was possibly going to die from this.

I was scheduled to go back for another follow-up on August 19th after my CT. During this time I lived it up with my girlfriend and assigned #recklessabandon to my life. Not that I was going to do anything crazy, but I figured if I only have a few possible years left I’m going to have a damn good time! I’m so thankful to have had the distraction of a friend in town. While it forced me to face the facts and forge ahead, it also set me on the course I would follow for the next month or so. I was strong. Everyone was so surprised that I could talk about my situation with facts and clarity. I was being brave. Little did I know that not long after I would completely fall apart.

I did even more research and eventually connected with an incredible private group on Facebook to whom I owe so much. It was them who asked what my oncologists experience was with Sarcoma. They pushed me to go to a Sarcoma clinic. They supported me, sent messages of positivity and shared their stories. Because of this group I looked into other clinics I could go to for a second opinion. There aren’t many in Canada. I received many recommendations for Princess Margaret Hospital (a hospital that only treats Cancer patients). I had called my surgeon’s office and asked for a second referral. I knew this could take weeks to receive so I didn’t want to wait to make this decision.

During this time my Mom made the decision to come back home and end her trip early. She came with me to my second oncology appointment.

We sat in the room and he walked in with a nurse. Sat down and just started talking. The CT confirmed that there were masses and we’d be booking surgery to take them out. Thankfully the chest x-ray came back clear. Phew, one success to celebrate.

CT Results: The CT scan shows that there is a soft tissue mass in the right pelvis, measuring 2.2 cm. There is also a low attenuating mass adjacent to the cecum remote from the appendectomy site, measuring 2.8 x 2.3 cm. It was noted that there was no significant retroperitoneal lymphadenopathy. However, there were some low-volume nodes in the right mesentery. Other than that, the hysterectomy bed was clear.

That was all he said. I asked if they would also remove my ovaries at the same time and he responded with “Why would we remove your ovaries? You’re far too young for that. You barely even have Cancer.” Uhhhmmmm…..WHAT?!!?! Is this the same oncologist I met with two weeks prior who told me I had a rare and untreatable Cancer? I was stunned. This was my Mom’s first introduction to him and she was clearly not impressed. I reminded him that he told me in my first appointment that we needed to remove them. He said he didn’t recall saying that and didn’t have my file with him. I then asked if he had a Sarcoma specialist on his team. He scoffed at me as though to say “what could you possibly know about specialists”. It was then that I told him I had asked for a second opinion at a Sarcoma clinic and wasn’t making any decisions yet. Right or not, about his suggested plan, he was unprofessional in his approach, had no recollection of his original diagnosis, and I was supposed to trust his judgement?? He had me thinking for the past two weeks that I was essentially going to die and now his story was totally different.

The nurse later gave the impression we should in fact go for the second opinion. It was her subtle way of telling us to go somewhere better. We took that hint and never looked back.